The question is how do we sustain the gain in employment seen during the pandemic due to hybrid work.
Showing posts with label Social Issues. Show all posts
Showing posts with label Social Issues. Show all posts
Historic gains in disabled employment during the pandemic.
"The increase in work-from-home arrangements and greater flexibility in work hours seen during the height of the pandemic may have permanently opened new employment opportunities for people with disabilities"
Money, careers and fame
Autism is a proven profit-making industry. Everything in autism space costs money; not just average money but real $$$$$$. It's profit with almost no accountability. If an autistic does not progress, it because they were not going to show progress anyway, you are too old, it's too late, so don't deserve solutions for your challenges or opportunities for your strengths.
Autism is also a career-making industry, with books published, speeches of fancy words at conferences. We are surrounded by money-making "autism-expert-celebrities" though no one still has a clue.
BioMedical Research is IMPORTANT for Autism.
BioMedical Research is IMPORTANT for Autism.
I wish people stop conflating all Autism Biomedical Research as a cure; cure being something the disability rights movement has been against. Honestly no amount of biomedical research is going to reverse disability but it can go a long way in alleviating some of its more troubling symptoms and health issues.
Reality is that a majority of a the moderate-high support autistic individuals do have significant health issues, and other behavioral issues that significantly impact their quality of life.
WE NEED solutions, including BIOMEDICAL ones and TECH ones in addition to changes in SOCIETAL MINDSET that is the main focus of the neurodiversity movement to address these issues.
Shutting down all and any biomedical research is a disservice to the autism community.
SIB's are real. 20% of autistics have SIB. Why are we not looking at SIBs at a physiological level. SIBs leave you battered and traumatized from personal experience. It is something I don't want to live with and I would gladly welcome any research on it. It's not about a CURE, its helping me life a less stressful life - my "pursuit of happiness."
How can these autistics get to the level of demanding acceptance, inclusion in education and employment that the neurodiversity movement is asking for, if the very same group is denying the very things that gives them to the platform of equity.
Why can't I have both - the biology to help with my challenges and the accommodations/inclusion of neurodiversity.
Autistics must not Stim
Autistics and stims. Please rethink.
Autistics MUST NOT stim.
Please rethink….
Stimming serves a purpose, its true
A coping mechanism, a way to soothe.
Calming nerves, reorganizing thoughtsA brush with Somatosensory body remapping
Engaging in stims... is quite typical for neurotypicals!!
Society accepts these stims with ease
Oh, the irony!!
... nonstop clicking of TV remote
... mindless paper doodling
... obsessive loop of tik-tok and youtube shorts
... head buried in phone when walking - accidents waiting to happen.
So should autistics be allowed to stim mindlessly too?
Au contraire, it's not always a breeze.
Stimming is exhausting, Energy consuming
A switch on repeat, an obsessive desire.
Runaway motor movements. No pause or stop
Maddening. All consuming. Overwhelming
Autistics and stims. Please rethink.
Some stimming can be beneficial, it's true.
But cross a threshold, and it becomes OCD,
The cutoff is something you need to determine.
Find balance in stimming, it's key,
To regulate emotions and bring inner peace.
Email please
I loved this social media post as it so relevant to autism and with the idea of Crip Time. What is Crip Time
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Before you summon me to a meeting or ask to get on a quick call, please please see if we can have it over email or chat (text) or a google doc?
To those who ask if I can do speaking engagements, why can’t I do calls (legitimate question) – I script my webinars & talks in advance, practise intensely and even then its nerve wracking, but I do it because I can reach a larger audience.
Picture below is that of a kindred spirit
Proof of not learning
Well said, Cal!
It's really amazing how many things are considered proof of not learning.
We're learning all the time.
Just because we aren't learning what/how/why/where you want doesn't mean we aren't learning!
- Cal Montgomery
#Redefine_the_Table
Thank you Lois Curtis
Today Lois Curtis passed away. She along with Elaine Wilson were the plaintiffs in the landmark 1999 Olmstead v. L.C case, which jumpstarted de-segregation and de-institutionalization of the disabled. It paved the way for community based supports for the disabled.
Over the summer I also had the opportunity to be part of a White House panel discussion on the occasion of the anniversary of the Olmstead Act. The Olmstead Act is more significant than we can even think. Imagine, just a few decades ago, people with more significant disabilities (which would have included "higher-support" autistics like me) were simply put into institutions.
Problem solved for society with the disabled tucked out of sight!! Case closed!!
In fact, when I was young, families were still being advised to send their autistic child away before they grew too attached to that child.
Folks like Lois did not get to choose. She had to fight to get out of an institution.
What if you did not even have a "voice" (like many "higher-support" autistics) to protest even as your family was told that this was what was "best" for you by all the "well-meaning" professionals.
Thank you Lois for speaking up.
As a child I don't think I quite understood what institutions were. The closest I came to seeing a visual was was whatever was shown briefly in the movie, Rainman.
It was not until I got into college and began my Disability Studies courses, that I began to understand how horrifying institutions and the idea of institutionalization was for the disabled. My very first disability studies course had been with Victor Pineda.
On the very first day of class he screened a documentary called "Lives Worth Living" on the disability rights movement. One of the most shocking and horrifying scenes in that documentary had been Willowbrook, one such institution in New York housing the disabled. It showed the disabled children living in degrading and filthy conditions. The doctors at Willowbrook themselves had grown so alarmed that they had invited reporter Geraldo Rivera's to do an expose which shocked the world.
I used to think my low expectation special education classrooms were degrading enough, but I shudder to think of what living in those inhumane institutions would have been like. In fact, in the 2020 documentary Crip Camp, there is a mention of a camper from Willowbrook "who would stuff himself with food till he got sick" as he would not get adequate food at Willowbrook.
Such history makes the Olmstead Act all that more significant, and meaningful to folks like me.
"The Olmstead decision has led the government to make more opportunities for people with disabilities to get services outside of institutions. Advocates and the government use the Olmstead decision to fight for disabled students’ rights to learn in the same classroom as non-disabled students. Advocates and the government use Olmstead to fight for disabled workers’ rights to work in the same workplace as non-disabled workers, and earn a competitive wage." (ASAN Remembers Lois Curtis)
Though we still have miles to go on disability rights on multiple fronts, I am so deeply appreciative of such disability rights icons who have hewn out the path that many of us now almost take for granted.
Thank you Lois
Related posts: #Disability_History, #Disability_Legislation #Disability_Rights, #Olmstead_Act #Policy_Law
Doomscrolling
Came across a new term, rather a term that's been around for a while.
Doomscrolling is the act of compulsively scrolling through negative news or social media feeds, often for hours at a time, despite feeling upset or stressed by the content. The term "doomscrolling" gained popularity during the COVID-19 pandemic, as people spent more time online and were inundated with a constant stream of alarming news about the virus and its effects. This behavior can lead to feelings of anxiety, hopelessness, and helplessness, as well as difficulty sleeping and concentrating
So it became this "vicious cycle in which users find themselves get stuck in a pattern of seeking negative information no matter how bad the news is."
It does not help that, online/social media algorithms are designed to feed us "attention-capturing" information and give us more of whatever we had clicked on. The result was a newsfeed of endless doom, which could trigger more compulsive scrolling behavior.
The disabled/autistic are equally vulnerable to these influences, further compounding our mental health issues.
Here is a research paper on this.
Doomscrolling Scale: its Association with Personality Traits, Psychological Distress, Social Media Use, and Wellbeing
Satici SA, Gocet Tekin E, Deniz ME, Satici B. Doomscrolling Scale: its Association with Personality Traits, Psychological Distress, Social Media Use, and Wellbeing. Appl Res Qual Life. 2022 Oct 19:1-15. doi: 10.1007/s11482-022-10110-7. Epub ahead of print. PMID: 36275044; PMCID: PMC9580444.
Satici SA, Gocet Tekin E, Deniz ME, Satici B. Doomscrolling Scale: its Association with Personality Traits, Psychological Distress, Social Media Use, and Wellbeing. Appl Res Qual Life. 2022 Oct 19:1-15. doi: 10.1007/s11482-022-10110-7. Epub ahead of print. PMID: 36275044; PMCID: PMC9580444.
SIB and Suicide Ideation
- 30% of autistics have Self-Injurious Behaviors (Soke et al., 2016)
SIB in autism could in fact be a manifestation of psychological trauma and indicative of underlying suicide ideation or maybe a substitute for suicide itself.
I had an autistic friend who attempted suicide first by swallowing the contents of an entire bottle of melatonin pills and then a second time by drinking a whole bottle of his dad's whiskey in his home. He had to have his stomach pumped in ER both times. All while he was a teen.
Ironically, the very act of suicide as such, requires a lot of motor skills, executive functioning and motor planning. So maybe SIB's are the only tools available for some autistics as an outlet for built up trauma, stress or distress from other underlying issues. Perhaps it's not thought of as suicide ideation when the autistic does not have spoken language to express it as such, but don't actions speak louder than words. Where SIB's become a substitute or prologue to suicide ideation.
Isn't this worth finding REAL solutions to, through autism research.
Isn't this worth finding REAL solutions to, through autism research.
Currently there is little to no support for autistics engaging in SIB or families who are trying to support those autistics.
Medication is currently seen as the only resort. And what are these drugs. All we have is Big Pharma recycling/ rebranding meds made in the 1950s. Minor changes in chemical drug structure allows for re-patenting and maintaining the exorbitant high prices/profits. I once heard Dr Antonio Hardan of Stanford mention that these drugs don't work the same way in autistics as in the general population - why then are we being over medicated from childhood with drugs that don't work for us.
There is a paucity of crisis centers resources or supports available to autistics with SIB's/aggression and their families. Most families don't know who to approach; it's like they are on an island. The autistic's life often becomes a revolving door of stays in hospital psychiatric wards (like a few of my friends) and then sent promptly back to their families after their stay. Why revolving? - because they are on meds which have limited effectiveness in the first place. And many get sent off to live in group homes or residential facilities as the family can no longer cope living from crisis to crisis (irony is that many group homes don't want autistics with behaviors) . If this is the state of the family, imagine the state of the autistic themselves who often have much more limited communication - nothing to do with speaking ability here, think - how communicative is any person, disabled or not, in times of distress (like you choke up when crying!!).
The limited number of meds available to us means along with being on meds, often since childhood, means many of us build tolerance to many of these drugs which further decrease their effectiveness. So even the ones that "kinda" worked don't work anymore. We are all going to live to 80 at least. What are we gonna do when we are in our 30s, 40s, 60s, 70s, 80s if nothing works.
We need research done to develop therapeutics that will actually work for us? And given autism is a spectrum, we need to get down to a physiological level so that precision therapeutics are developed so we can reduce side effects.
At the end of the day we also need to remember that psychotropic drugs only help to manage symptoms or dampen behavioral symptoms. So what is also needed is biomedical research into underlying issues at a physiological level that translate into affordable mainstream healthcare - its that research into gut issues, sleep issues, auto-immune issues, neuro-inflammation, movement issues etc - these are real issues that many autistics are facing - cuz if we get to the bottom of those, maybe we can reduce SIB by that much.
At the end of the day we also need to remember that psychotropic drugs only help to manage symptoms or dampen behavioral symptoms. So what is also needed is biomedical research into underlying issues at a physiological level that translate into affordable mainstream healthcare - its that research into gut issues, sleep issues, auto-immune issues, neuro-inflammation, movement issues etc - these are real issues that many autistics are facing - cuz if we get to the bottom of those, maybe we can reduce SIB by that much.
Takeaways from CAN conference
The three day College Autism Network concluded today in Nashville TN.
I managed to attend some of the sessions, I was especially interested in the sessions around employment.
Other than some very disquieting, very disappointing and very disheartening remarks at the Plenary session in this post, there were some great suggestions around focus on the rocky road to employment.
NOW FOR THE BETTER PARTS of the CAN conference
The Thu morning session by Helen Rottier was my favorite, followed by Coaching the Coach and Peer mentoring. I also attended the Thu plenary session by employers, and the World Cafe on Friday. Blending ideas from all these sessions. Missed Eric's Garcia's opening remarks on Wed (tornado alert got in the way).
What can colleges do to help the rocky road to employment (often due to perceived lack of experience)
- encourage internships and campus employment.
- get students in front of employers as career fairs don't often work (crowded/sensory overwhelming), smaller networking events to increase student confidence.
- its not just about knowing the door (resource) and getting to the door, its also giving the confidence to walk into that door and staying inside. For example in a college context, not enough to let the college student know there is a student writing center, need to encourage (gentle bump) to go in there, maybe make a few introductions and get them comfortable with that resource. Else it will just remain a theoretical unused resource.
At the employer end - I think these are good starting points.
- Better job descriptions by employers
- Matching interview to actual job skills.
- Augment traditional interview. Applicant first consideration. (Look at the amazing tech being developed by Frist Center @ Vandy on this)
- Joining a large company can feel like being tossed to the wind. Assign a buddy and career coach for each new hire.
- On a path of Awareness acceptance advancement
- Virtual safe space to get support.
- training managers "to be a human being". How to manage diff forms of communication.
- sustaining employment by understanding what it entails eg: transportation, time taken to wash uniforms
- self regulation in the workplace with OTs etc.....
Helen had us all start by stating something that should be taught to middle schoolers. such a relevant question as really a lot of ideas gets shaped at the school level itself.
I feel its teaching middle schoolers self-esteem so they don't "settle."
It really starts with elementary and middle school itself. For instance a majority of special ed kids are pushed into the non-diploma track in middle school IEPs (deemed not capable of being on the diploma track - the actual wish of the child be dammed). That in itself closes the college track for you - that is a choice the autistic should get to make well into high school, that choice should not be taken away from you by "well-meaning" educators, which ties into coaching the coaches.
I think school educators need to be taught to get out of unconscious bias mindset of the end goal of special education being to create a good patient. That outcome is a dead end for the autistic. At the same time college guidance counselors struggle with motivation in autistic students. How can a good patient be motivated if their life is one of compliance. There needs to be wholesale mindset shift of educators.
A student who likes himself, is liked for who is he --> self-esteem and self-confidence --> he can think about what he is passionate about which in turn may drive his motivation --> that is the student who will succeed in life and in college.
Maybe college is not for everyone. A good trial I feel is junior college, a smaller environment where you can get your feet wet and try out college expectations and it also gives you space to think and explore what you really want to do. What junior colleges lack in resources they seem to make up in terms of support and encouragement. Junior colleges are a very under appreciated resource for autistics.
Helen also brought up accommodations. My experience has been that accommodations is only the beginning. Accommodations are like a very necessary but not at all sufficient for actual success. You can get all the accommodations in the world on paper but that alone will not make you successful. Ultimately, it's the people around you which make those accommodations translate into success. In college it's the empathy of faculty and peers and disability counselors. It's those little tweaks and workarounds.
Another point Helen brought up was around planning for any gap year. So true. Else your gap year will turn out to be a year long daze in front of the TV and you waking up bewildered and frustrated. I know I would not do well with gap year without a clear structure of its beginning, in-progress and end - it would like derailing a running train and it would be hard to get the train back on track.
I was curious about what peer-to-peer mentoring entailed and how it was being implemented so went for that session, I think this slide below captured my attention the most, with many of the issues facing college students.
For instance - At Vandy, I have weekly check in's with Dave Caudel (ND) at Frist Center which I find very valuable. For instance, Dave gave me valuable tips on how to read a scientific paper quickly which was like yay.
The first 2 boxes, I will eventually will get down, the last two will be the continued challenge especially box 3.
There was also discussion on whether the peers would be NT or ND, I think there is value in both. The latter would definitely lend to more empathy. What helps even more is if peers are trained in all the campus resources so can at least point you to resources.
What I was not so certain about was about peers getting paid a hourly rate for their "peer-ship" as in my mind it turns them into a sort of therapist vs a friend. I have been surrounded by "paid" therapists/staff/respite_workers/aides pretty much all my life and part of me longs for people who are there not because they are paid to be, but simply want to spend time with me (my definition of friendship). I don't to be a job for someone - paid people last a year or two and leave for the better paying job. I want connections with actual peer friends.
At the World Cafe small group discussion on employment during the Friday session, I was able to reference back to this slide as really these "soft skills" is often the more challenging part for the autistic even in the employment arena. They may have all the skills in the world for the actual job but it's managing these other "fluff" around the job that makes the difference in job retention and job satisfaction.
Changes in Big-5 during Pandemic
I always think of the exponential effects on autistics.
(https://view.info.apa.org/?qs=ab2c9530baf7a6ce1051f3f9254b1595fbcf171f4a81ad3eed135b5a5f2cec4508d1f4b727d406c0bea89be99e8df4a9ad7fee31eba4572980be2e27faddf3b287ffdd23c1cb6fc2f324d4ab0e197f72)
Friendships in Autism Adulthood.
"In 1990, only 3 percent of Americans said they had no close friends; in 2021, nearly 12 percent said the same. The United States is in the grips of a loneliness crisis that predates the Covid pandemic."
https://www.nytimes.com/2022/10/01/well/live/how-to-make-friends-adult.html
If this is state for NTs, imagine the situation for autistics who generally have little - no friends through childhood.
However, some of the suggested ways to making friends is hardly the easiest for autistics either - "You really have to try and put yourself out there."So it's a continued conundrum.
245 years to get to Indigenous Peoples' Day
It just took 245 years to recognize Indigenous Peoples' Day as a National Holiday in 2021.
Till I came to Berkeley, I had not been aware that a simple start (though by no means enough) was land acknowledgment, which I saw at many events; recognition that UC Berkeley sits on the territory of xučyun (Huichin), the ancestral and unceded land of the Chochenyo speaking Ohlone people.
Reflecting below on an assignment done on Zitkala-Sa for American Literature back in Grade 10 and an essay on Black Elk Speaks for my American Indian Ethnic Studies course a few years back.
School Days of An Indian Girl by Zitkala-Sa - Example of Realism
(Grade 10 assignment)
Zitkala-Sa’s recollection is a poignant account of the conflict and clash between two cultures and the frustration of ending up in a no-man’s land. She is a young Indian girl who is taken away to be assimilated into the white society; by teaching her the mannerisms and customs of the white race. The problem with assimilation seems to be an all-or-nothing attitude by the teachers. She is forced to forsake her own native customs and language (including cutting her hair) and then told to go live on the reservation. So she can never be fully Indian. Even her own mother is not able to relate to her and vice versa. Yet the color of her skin will always make her a second class citizen in the white community. She will never get full acceptance there either. She may have won the speaking contest, yet every time she goes to a new place it would be like starting over with the new set of audience. She would have to prove herself over and over again. The reader is profoundly affected by the stark realism and detail of her experiences in her narrative. The reader journeys with her on her loss of innocence - “ we had been very impatient to start our journey...” (207) to a dissatisfied state of bewilderment - “The little taste of victory in my heart, did not satisfy a hunger in my heart.”(221).
The story has all the elements of realism. It is devoid of emotionalism or melodrama. The events are presented in a very matter of fact way. “Their mothers, instead of reproving them such rude curiosity, looked closely at me, and attracted their children’s attention further to my blanket.”(208). At each stage there is another grim reality to be faced. There are outside forces (the assimilation process) and events that affect that affect her at every turn.
Reflecting below on an assignment done on Zitkala-Sa for American Literature back in Grade 10 and an essay on Black Elk Speaks for my American Indian Ethnic Studies course a few years back.
And if I may add a disability angle here, I can so relate to this line from my assignment "every time she goes to a new place it would be like starting over with the new set of audience. She would have to prove herself over and over again." With disability, especialy if you are seen as "more disabled" you have to prove yourself over and over and over with every new audience and even to the same audience to prove that somehow you have not regressed.
You have to think about the terrific power play at work here (sarcasm intended) - the dominant party strips away the very identity and resources of non-dominant party (identity and resources which gives them confidence and which makes them strong), so the latter will stay second class and subservient in the former's socio-economic structure.
I'm always felt very sad when studying history as it seems to be a series of such power plays, one group suppressing another. This has been the history of colonialism and occupation the world over. The first thing the invader does is to destroy the structure of the old culture, then replace it with the own religious structures and values, till the old culture becomes one of shame for its practitioners. After a few generations all knowledge of the old culture is lost to human memory.
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(Grade 10 assignment)
Zitkala-Sa’s recollection is a poignant account of the conflict and clash between two cultures and the frustration of ending up in a no-man’s land. She is a young Indian girl who is taken away to be assimilated into the white society; by teaching her the mannerisms and customs of the white race. The problem with assimilation seems to be an all-or-nothing attitude by the teachers. She is forced to forsake her own native customs and language (including cutting her hair) and then told to go live on the reservation. So she can never be fully Indian. Even her own mother is not able to relate to her and vice versa. Yet the color of her skin will always make her a second class citizen in the white community. She will never get full acceptance there either. She may have won the speaking contest, yet every time she goes to a new place it would be like starting over with the new set of audience. She would have to prove herself over and over again. The reader is profoundly affected by the stark realism and detail of her experiences in her narrative. The reader journeys with her on her loss of innocence - “ we had been very impatient to start our journey...” (207) to a dissatisfied state of bewilderment - “The little taste of victory in my heart, did not satisfy a hunger in my heart.”(221).
The story has all the elements of realism. It is devoid of emotionalism or melodrama. The events are presented in a very matter of fact way. “Their mothers, instead of reproving them such rude curiosity, looked closely at me, and attracted their children’s attention further to my blanket.”(208). At each stage there is another grim reality to be faced. There are outside forces (the assimilation process) and events that affect that affect her at every turn.
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Autistic Burnout
What is it?
Autistic burnout can affect the ability to function in daily life, and may be accompanied by symptoms such as depression, meltdowns, anxiety, and executive dysfunction.
Causes
It is a result of prolonged exposure to stressors, such as sensory overload, social demands, and other challenges.
You Never Gave Up on Me
Dedicated to the EXTRAORDINARY MOMS and DADS and PARENTS out there,
on behalf of your extraordinary child.
You held me in your arms, oh mother mine
When I was a mere wrinkled newborn babe
You gazed at me with love and joy
Just as all young mothers do.
I walked my first step and said my first word
With pride, you watched my every move
You expected me to walk the predictable path
Just as all young mothers do.
You watched me slip and slide away
Wondering why I didn't do what other kids do
I stopped making eye contact with you
And stopped the spoken words too
A well of sadness entered your eyes
The smile not always in place
Perplexed and puzzled
Do I know this child of mine at all?
But, you rolled up your sleeves
You never gave up on me
You took the other fork on the road
The one without the map
You struggled and searched for solutions
You fought endless battles for me
You put your fists up and took a stance
And you never gave up on me
Lost in the desert of sadness
You changed your perception of things
You summoned new strength and courage
From the unfathomable deep
You changed your whole life for me
And, you never gave up on me
You coaxed every small victory out of me
Pride overflowed from your eyes
Steps of this extraordinary child
Of quite the extraordinary mom
You do the job of a dozen people
And you never gave up on me
Exhausting is the journey you're on
Exhilarating only some of the time
I am not the typical child you thought you'd raise
New challenges lie in the path every day
To the extraordinary mom who holds my hand
And who never gave up on me.
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I wrote this poem sometime during high school. But I feel it is still so relevant even today. This poem is dedicated to all those wonderful and amazing moms and dads and parents out there who did not give up on their disabled child. Thank you for your dedication and fortitude, in rolling up your sleeves and taking on the world for us, without even knowing how to go about it.
I think back to the story of the frog who climbed to the top of the well amidst discouragement from the crowd that the task was impossible; turns out the frog was deaf so had not heard the discouragement, so made it all the way to the top.
This is what parents of the children seen as having more challenging disabilities face every day. From the get go, they are nudged to tone down expectations of their children, not to expect much. Lady Liberty did not hold up her torch of the American Dream for that child.
Over the years, I have seen many of my peers disappear one by one into the void of the system (out of sight and out of mind of society), as the once eager and enthusiastic parents reach a state of burnout and exhaustion, with this constant barragement of discouragement and lack of support. Other adult peers who have aged out of the special education system are sitting at home with their aging parents as adult day programs want “easy to manage” adults (sheep!!), even as there is a dearth of support systems for the ones with “behaviors.” It is like a battle for the classroom placements and supports during the school district years, starting all over again in adulthood for many.
Thank you to all the extra-ordinary parents out there, for your support and embrace, when the world seems to abandon us at every new stage, not just when we were children but as adults and possibly even when we are middle aged. For many with more significant disabilities, our parents and siblings are likely the only family we will ever have. I wonder who will be there as this lifelong pillar, when we are senior citizens ourselves, where we are not just battling aging issues but also the nature of our disability may mean that not all of us reach a level where we are able to take care of ourselves and have to depend on the largesse of paid staff for a decent quality of life.
Parents, Yours is truly a dedication of a lifetime. Thank you.
Nothing to say, an afterthought puzzling oddity.
Nothing to say, an afterthought puzzling oddity.
Last week I won a prestigious fellowship for grad school with an alum that boasts students from elite schools across the US. It is a honor indeed to be recognized and selected and I am so over the top.
In the cohort of 30 fellows, four Indian-American students won the fellowship which was mentioned in a few Indian newspapers as well.
What I want to highlight is one specific Indian newspaper (not mentioning names here). There was plenty to say on the accomplishments of the other 3 non-disabled Indian-American students who are indeed quite accomplished. I am in deep admiration of their accomplishments.
However, when it came down to talking about me, it was like they were puzzled as to what to say around what my accomplishments were (if any). Other than Berkeley, graduating, disabled. I don't fit into their standard stereotype of the newsworthy nondisabled Indian-American student that makes it into a top school and probably has a dozen inventions or patents along the way. If I had been a nondisabled student helping the "usual objects of pity" disabled community with some invention, well that would have been newsworthy. It was like they were were struggling to write about this puzzling oddity of a disabled Indian student, who did not quite belong in their column, but would look bad for them if they left out altogether.
The sad sad irony in all this is that this is a Bay Area paper. I was born and have lived in the Bay Area all my life.
The point here is not my wanting more lines of mention around any accomplishment in an Indian newspaper. It's the feeling of being placed in the "other" group, of feeling that I don't "belong" in my own ethnic community. I felt quite sad.
Should I be surprised? After all, growing up, I've pretty much been ignored and not included by the nondisabled Indian kids who lived on my street in a South Bay neighborhood dominated by Indian and Chinese kids. We lived on the same street but in different Marvel multiverses. I simply did not exist in their world. They did grace my doorstep exactly once a year, at Halloween, arms outstretched for their share of candy. Understandably, Halloween is my least favorite holiday as it is a painful reminder of non-inclusion.
And lets not forget, in the not so distant past of 2015, the Gopal family in Sunnyvale had been sued by their neighbors and forced to move - one of the reasons being an autistic kid on the street reduced property values in the high priced Silicon Valley neighborhood.
Of course I cannot generalize my entire community - There are exceptions and I am so appreciative of those "gems" who crossed paths with me.
The point again of this whole piece- media representation matters. Else the stigma around disability will just continue from one generation to the next.
Think about it. Given that autism is the fastest growing neuro-developmental disability of today, it is highly likely that a near and dear one of yours will have autism sometime in the near future. Is stigma and exclusion really what you want for that person you care about?
Inclusion and reduction of stigma does not have to be an unattainable illusion.
It can be a reality. Let's start on that today.
This is about my mother
Written by one of students in my 1:54 Autism Decal class as her final reflection assignment for the class.
"It's based both on the sources and a little bit on my own family. You can share it on your blog! Thank you for teaching this wonderful class" Myr-An Le
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THIS IS ABOUT MY MOTHER
Sometimes, I wonder what I must look like to my mom.
I've outgrown the cradle of her arms,
but am I still small in her hands?
By the time you are given breath to exist,
I want to have learned the secret to being brave.
- Excerpt from To The Child I May Never Have
My mom is 50 years old. Hair dyed dark with box dye for the last two decades. Eyes sharp and discerning, but I never know what she’s looking at. When she stands, she looks like she was stitched to stand right where she is. You don’t wonder why she is there, in your doorway with a plate of plum slices or in the grocery store eyeing unit prices or on the tarmac loading the airplane.
She has been a lot of things: daughter, eldest of seven, Catholic, 1.5 generation Vietnamese American, atheist, 1st generation college graduate, CFO of a hair salon, wife, substitute teacher, airline worker, accountant, family matriarch, mom.
Growing up, she used to tell me, “I always thought nurture beat nature until I had kids. Now, I forgive your father because I love you.”
Lately, I find myself asking, “Why?”
Why did you do this, why do you think this, why are you like this. I want to be able to unravel my mom’s hidden past and piece it back together.
There is very little discussion on autistic parents. Autism is something described most frequently in young children and rarely in adults. How could an autistic person grow to be an adult, let alone have children? And yet, autism is also understood to be hereditary.
Being an autistic parent has its own unique challenges.
In “Motherhood: Autistic Parenting,” Cynthia Kim writes that “Being a mom is an inherently social activity.” She describes a problem many autistic mothers have while raising their children. How do you teach a child to socialize when you struggle with it yourself?
Motherhood involves setting up playdates, chatting with other parents as your children play, and playing with your children too. And, unlike most social interactions, it’s a full-time job.
Growing up, my mom carefully taught me rules. This is how you talk to people about their family. This is how you talk about achievements. This is how you walk and this is how you smile. When people say this, you can ask that, and when you get a gift, you do this.
She has rules for everything in life. Not for me and my sister, but for everyone. From my mom’s point of view, there is a way things should be and a way things shouldn’t be, and she does not enjoy accepting the disparity between the ideal and our reality even if she understands the wisdom of this acceptance.
As many rules as there are in my mom, there is also a great capacity for change. “I had to force myself to hug you when you were growing up,” my mom tells me one evening.
This sentence does not register as cruel to me, although it does stay with me for the rest of my life. I see it for its truth: evidence of a love in spite of. And I am grateful for a mom incapable of change somehow, against all odds, changing.
This is for you, my mom says. But really,
she must mean
she thinks of me.
- Excerpt from Watercolor Plum
In my experience, autism does not exist in Vietnamese communities. Early traits of autism like sorting toys and being quiet are signs of a good child who might be mathematically inclined, the family’s next engineer. When those traits develop into selective mutism or antisocial behavior, they aren’t recognized as a group of interconnected behaviors stemming from a neurodivergency. They are seen as individual characteristics, some problematic and others valuable.
20 percent of all students in classrooms are served under the Individuals with Disabilities Education Act (IDEA). When these numbers are broken down by ethnicity, 7 percent of all Asian students are served by this act. Autism is already extremely underdiagnosed in general. This issue is further exacerbated in some Asian communities where learning disabilities are personality traits.
There are foils. My sister is mute until kindergarten. My mother, knowingly, sees herself in my sister, and she does what she thinks would have helped her. She sometimes says, jokingly, “Your sister is a little on the spectrum,” but she does not take on the label for herself until I am 19 and she is 49. She never worries about my sister because she knows that problems come and go for “people like us.”
I have an aunt on my dad’s side. Like my mom, she’s an eldest daughter who immigrated to America with her parents at a young age because of the Vietnam War.
Nobody talks about my aunt who never learned how to hold a conversation, patiently completes jigsaw puzzle after jigsaw puzzle, and excitedly tries to convince anyone nearby to watch YouTube videos of people caring for dolls.
Here is something almost any Vietnamese American person can confirm: the older Vietnamese generations do not talk about trauma. I did not learn my father was a boat refugee until I was in college. Until I asked, I was not told that my mother’s dad likely has a passport for a nation that no longer exists. Until I asked, I was not told that my father’s mom came here first, alone without her husband or a word of English and with three kids in tow, the eldest of which is likely intellectually disabled.
I often wonder what parts of my mom have gone unspoken. Nobody talks about the ways they fail. But I’m here now, and I feel like I am failing.
I want to ask her, “Was it hard for you like this? Is it in my nature to be this way and I will find my way out? Or did I grow up too different from you to be as happy as you are now?”
World blue, Mother Earth, treat me well, please.
Please, hold my hand and tell me I will be okay, and
life is not so bad
- Excerpt from Father Sky
In the same way my sister breaks a Rubik’s cube, I am taking my mom apart and piecing her back together in the hopes that I can discover what we are composed of today. There is nothing so interesting as discovering that what appears to be a collection of moving parts is, at its core, one thing alone.
SOURCES
“Motherhood: Autistic Parenting” by Cynthia Kim:
https://awnnetwork.org/motherhood-autistic-parenting/
“The unexpected plus of parenting with autism” by Sarah Deweerdt:
https://www.spectrumnews.org/features/deep-dive/unexpected-plus-parenting-autism/
“In Asian communities, raising a child with autism can be a lonely, difficult road” by Melody
Cao:
https://centerforhealthjournalism.org/2015/07/16/asian-communities-raising-child-autism-can-be
-lonely-difficult-road
“Why Asian American kids are under-diagnosed when it comes to learning disabilities” by
Victoria Namkung:
https://www.nbcnews.com/news/asian-america/asian-american-kids-are-diagnosed-comes-learning-disabilities-rcna2425
“Why Can’t We Talk About Autism in the Asian-American Community?” by Sunny Jang:
https://www.autismparentingmagazine.com/autism-asian-american-community/
THIS IS ABOUT MY MOTHER
Sometimes, I wonder what I must look like to my mom.
I've outgrown the cradle of her arms,
but am I still small in her hands?
By the time you are given breath to exist,
I want to have learned the secret to being brave.
- Excerpt from To The Child I May Never Have
My mom is 50 years old. Hair dyed dark with box dye for the last two decades. Eyes sharp and discerning, but I never know what she’s looking at. When she stands, she looks like she was stitched to stand right where she is. You don’t wonder why she is there, in your doorway with a plate of plum slices or in the grocery store eyeing unit prices or on the tarmac loading the airplane.
She has been a lot of things: daughter, eldest of seven, Catholic, 1.5 generation Vietnamese American, atheist, 1st generation college graduate, CFO of a hair salon, wife, substitute teacher, airline worker, accountant, family matriarch, mom.
Growing up, she used to tell me, “I always thought nurture beat nature until I had kids. Now, I forgive your father because I love you.”
Lately, I find myself asking, “Why?”
Why did you do this, why do you think this, why are you like this. I want to be able to unravel my mom’s hidden past and piece it back together.
There is very little discussion on autistic parents. Autism is something described most frequently in young children and rarely in adults. How could an autistic person grow to be an adult, let alone have children? And yet, autism is also understood to be hereditary.
Being an autistic parent has its own unique challenges.
In “Motherhood: Autistic Parenting,” Cynthia Kim writes that “Being a mom is an inherently social activity.” She describes a problem many autistic mothers have while raising their children. How do you teach a child to socialize when you struggle with it yourself?
Motherhood involves setting up playdates, chatting with other parents as your children play, and playing with your children too. And, unlike most social interactions, it’s a full-time job.
Growing up, my mom carefully taught me rules. This is how you talk to people about their family. This is how you talk about achievements. This is how you walk and this is how you smile. When people say this, you can ask that, and when you get a gift, you do this.
She has rules for everything in life. Not for me and my sister, but for everyone. From my mom’s point of view, there is a way things should be and a way things shouldn’t be, and she does not enjoy accepting the disparity between the ideal and our reality even if she understands the wisdom of this acceptance.
As many rules as there are in my mom, there is also a great capacity for change. “I had to force myself to hug you when you were growing up,” my mom tells me one evening.
This sentence does not register as cruel to me, although it does stay with me for the rest of my life. I see it for its truth: evidence of a love in spite of. And I am grateful for a mom incapable of change somehow, against all odds, changing.
This is for you, my mom says. But really,
she must mean
she thinks of me.
- Excerpt from Watercolor Plum
In my experience, autism does not exist in Vietnamese communities. Early traits of autism like sorting toys and being quiet are signs of a good child who might be mathematically inclined, the family’s next engineer. When those traits develop into selective mutism or antisocial behavior, they aren’t recognized as a group of interconnected behaviors stemming from a neurodivergency. They are seen as individual characteristics, some problematic and others valuable.
20 percent of all students in classrooms are served under the Individuals with Disabilities Education Act (IDEA). When these numbers are broken down by ethnicity, 7 percent of all Asian students are served by this act. Autism is already extremely underdiagnosed in general. This issue is further exacerbated in some Asian communities where learning disabilities are personality traits.
There are foils. My sister is mute until kindergarten. My mother, knowingly, sees herself in my sister, and she does what she thinks would have helped her. She sometimes says, jokingly, “Your sister is a little on the spectrum,” but she does not take on the label for herself until I am 19 and she is 49. She never worries about my sister because she knows that problems come and go for “people like us.”
I have an aunt on my dad’s side. Like my mom, she’s an eldest daughter who immigrated to America with her parents at a young age because of the Vietnam War.
Nobody talks about my aunt who never learned how to hold a conversation, patiently completes jigsaw puzzle after jigsaw puzzle, and excitedly tries to convince anyone nearby to watch YouTube videos of people caring for dolls.
Here is something almost any Vietnamese American person can confirm: the older Vietnamese generations do not talk about trauma. I did not learn my father was a boat refugee until I was in college. Until I asked, I was not told that my mother’s dad likely has a passport for a nation that no longer exists. Until I asked, I was not told that my father’s mom came here first, alone without her husband or a word of English and with three kids in tow, the eldest of which is likely intellectually disabled.
I often wonder what parts of my mom have gone unspoken. Nobody talks about the ways they fail. But I’m here now, and I feel like I am failing.
I want to ask her, “Was it hard for you like this? Is it in my nature to be this way and I will find my way out? Or did I grow up too different from you to be as happy as you are now?”
World blue, Mother Earth, treat me well, please.
Please, hold my hand and tell me I will be okay, and
life is not so bad
- Excerpt from Father Sky
In the same way my sister breaks a Rubik’s cube, I am taking my mom apart and piecing her back together in the hopes that I can discover what we are composed of today. There is nothing so interesting as discovering that what appears to be a collection of moving parts is, at its core, one thing alone.
SOURCES
“Motherhood: Autistic Parenting” by Cynthia Kim:
https://awnnetwork.org/motherhood-autistic-parenting/
“The unexpected plus of parenting with autism” by Sarah Deweerdt:
https://www.spectrumnews.org/features/deep-dive/unexpected-plus-parenting-autism/
“In Asian communities, raising a child with autism can be a lonely, difficult road” by Melody
Cao:
https://centerforhealthjournalism.org/2015/07/16/asian-communities-raising-child-autism-can-be
-lonely-difficult-road
“Why Asian American kids are under-diagnosed when it comes to learning disabilities” by
Victoria Namkung:
https://www.nbcnews.com/news/asian-america/asian-american-kids-are-diagnosed-comes-learning-disabilities-rcna2425
“Why Can’t We Talk About Autism in the Asian-American Community?” by Sunny Jang:
https://www.autismparentingmagazine.com/autism-asian-american-community/
The Double Empathy Problem
Autism Lexicon - The Double Empathy Problem.
Double Empathy Problem refers to the mutual challenges in social understanding and empathy between autistic and neurotypical individuals, arising from differences in communication styles and cognitive processing. [ Read in more detail here]
PlainSpeak. Double Empathy Problem is the idea that both autistic and non-autistic people can struggle to understand each other because they communicate and interpret social cues differently. [Read more in plain language here]
Double Empathy Problem refers to the mutual challenges in social understanding and empathy between autistic and neurotypical individuals, arising from differences in communication styles and cognitive processing. [ Read in more detail here]
PlainSpeak. Double Empathy Problem is the idea that both autistic and non-autistic people can struggle to understand each other because they communicate and interpret social cues differently. [Read more in plain language here]
Related Posts on [The Double Empathy Problem]
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