Troubling Ableism in Neurodiversity

Written Oct 13 22. Still ironically relevant. 
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Troubling Ableism in Neurodiversity
Is Neurodiversity an Exclusion Club?

JUST HEARTBREAKING AND DISAPPOINTING
 

The Thursday morning Plenary Session of the College Autism Summit was an employer panel of companies hiring neurodiverse employees. The dictionary (dictionary.com) defines "plenary" as the most important session of the day "attended by all participants in a conference." ie: some impactful words of wisdom were expected. But...

These are remarks by a neurodivergent panelist who works for one of these large hiring companies. 

1. Most jobs hiring neurodiverse are in tech

2. Neurodiverse employment target "low-no" support-needs 

3. Suggestion by this person as to what to do with the rest, the higher support neurodiverse:
                "Have companies ask their janitorial vendors to hire." 


What was disillusioning - the comment was by a neurodiverse panelist on this employer panel. 


SERIOUSLY!! 
An "othering" of remaining autistics. 

So these "other" autistics, the moderate-high support needs autistics
are only fit to be the cleaning crew!!


The irony in the choice of profession mentioned by the panelist is not lost on me. It's not that janitorial jobs have less dignity (all professions deserve dignity and respect) - but it's the idea of furthering the invisibility of this 'other' group . For instance, don't many cleaning crews usually work after the offices close for the day - out of sight of the public eye; a reminder of the UGLY LAWS (1867-1974) where disabled were fined/arrested for being seen in public as they were “visual disturbances.” (I remember being absolutely shocked and horrified when I had first learned of the existence of these laws in my first Disability Studies class at UC Berkeley with Prof Victor Pineda. Even cities were planned, such that “institutions” housing the disabled, were placed at the very outskirts of the city)


As it is, many many of the autistics peers I have grown up with (in the 'other' group) in my special education classrooms are disappearing into the black hole of day care programs/ group homes /institutions as adults, where they can be out of sight for the majority of society, even as families are struggling to support those individuals. Out of sight, out of mind, is a clean solution for society, as nothing more need to be done. In the meantime, they struggle in systems that trap them in the cycle of dependency, neglect and poverty due to inadequate services, supports and opportunities.


In the meantime, neurodiversity employment per this person is essentially an exclusive club where 'club members' will ask for rights derived from the long-fought-for Disability Rights Movement - that there must be employer cultural change where "low-no" are accepted, accommodated, advanced, given access to higher paying jobs, a chance at upward mobility, given a voice; even as they shut that avenue to other fellow disabled with a dismissive wave of - you are not good enough to join us, fit only for low wage jobs. A throwback to how disabled were viewed before the Disability Rights Movement. 


Isn't this imposing the very ABLEISM you are fighting the neurotypical world for?

Duplicity. Shame on you!'


With all sarcasm intended, the suggestion of "companies have their janitorial vendors hire," these 'other' autistics would  be a neatly packaged solution - corporate social responsibility accomplished as all autistics are now employed!! 


The new employment solution given for these 'other' autistics during this National Disability Employment month, apparently is not just LOW-WAGE but also preferably rendered INVISIBLE. 


If this is what the neurodiversity movement amounts to, then the whole idea of neurodiversity is a disillusioning sham. It's promoting exclusion, not inclusion. It's not upholding the disability rights mantra of "Nothing about us without us" or the Sins Valid Disability Justice principle of "Leadership of the Most Impacted" ie: there is no Disability Justice unless there is justice for the most marginalized. 


JUST DISILLUSIONING AND DISAPPOINTING


It's like being invited into the neurodiversity dining room cuz bad public image to leave you standing at the door. But once inside, you find you are not really at the main table with good food but the plan was to redirect you to the side table with scraps. Outside the dining room, society thinks the entire neurodiverse community has been fed.

So I have to ask what is the difference between other groups asking for a separate label/room and the neurodiversity community creating the same hierarchy inside the dining room.
 

MINDSET CHANGES, HAS TO START WITHIN THE NEURODIVERSE COMMUNITY FIRST


No wonder service organizations like the Department of Rehabilitation are reluctant to support the college aspirations of these "other” autistics; why encourage college if the end goal for them is a minimum wage job at best. And even before that in the special education pipeline, a majority of 'other' autistics in special education are pushed towards the non-diploma track at the middle school age itself (never mind their personal goals that may be otherwise). 


Acceptance and inclusion to education and well-paying jobs is not just the right of some autistics/ neurodiverse, it must be for ALL. This is not why 8-year old Jennifer Keelan along with many others pulled themselves up the steps of Capitol Hill before the Americans with Disabilities Act was passed in 1990. This is not why 150 disabled people occupied the HHS offices at a San Francisco federal building for 28 days (the longest sit-in in US history) to get Section 504 passed. 


If the "remaining autistics" (the ones without privilege) don't get acceptance from our own autistic/neurodiverse community in the spaces they want to be in, how can we begin to expect acceptance and inclusion and belonging from the wider neurotypical community? 


MINDSET CHANGES, HAS TO START WITHIN THE NEURODIVERSE COMMUNITY FIRST


Regarding the first points 1 and 2, I can still take it as a work in progress. We are still figuring out the how's

  • Tech jobs are a START and I saw awareness of the need at various sessions of the conference to push autistic employment into non-tech fields. At least people are thinking about this. 

  • The fact that companies are starting with  autistics perceived to be easier to support, can again be thought of as a START that we can build on - but by no means does it end with one subgroup. 

  • It's ok to say we don't have all the solutions now. At least leave this door open so that we can continue to think on the hows. 

I will draw a parallel to scientific research to illustrate. We don't have all the explanations currently but we keep chipping away and will slowly unearth solutions. At times it's about arriving at the correct question and also the methods and evolution of available technology. But science and tech has kept pushing those frontiers. 


Likewise in autism research, most current research/tech looks at testable autistics -  which at least gives us a broad overview of issues. But we cannot stop there - for the next step we need to dig deeper at physiological level so we get to what's going on so we can find ways to better support everyone including these "other" autistics. 


Please be part of the solution and not part of the problem. 


For instance if we make headway in 

  • Sensory areas (understanding at a physiological level to better support with tech or other solutions) 

  • Communication piece (think  BCI that can bypass motor and sensory systems, more affordable intuitive AAC…) 

  • Technology supports, that simplifies motor tasks/ executive planning around daily living skills (think robot helpers, self-driving cars, hybrid employment, more intuitive tech…)

  • Translational precision medicine for underlying health issues and co-occurring conditions (in place of current diagnostic overshadowing).  

  • Development of better meds to help with mental health needs, self-injurious behaviors, obsessive compulsive behaviors etc. Instead all we have is Big Pharma recycling/ rebranding drugs dating back to the 1950s. I was shocked to learn in my undergrad "Drugs and the Brain" class at UC Berkeley that even a minor tweak in just one branch of a drug's chemical structure allows for re-patenting which means continuation of the exorbitant high prices/profits. Did you know that ~30-40% of autistics are on medication for behaviors (Logan et al., 2012)?  I once also heard Dr Antonio Hardan of Stanford mention at the Stanford Autism Conference that these behavior drugs don't work the same way in autistics as in the general population - so why are we still over medicated with these same drugs.  

  • empathic equitable policies

  • ... more

Think then (with just this far-from-exhaustive list) of the incredible inclusion we can have of the entire spectrum of autistics in society, in higher education and in the workplace. What a huge improvement in quality of life that would be, not just for the autistics, but also for the world. 


I see policy, legislation, research, healthcare and societal mindsets as varying angles of the very same disability rights movement. 


I also have to wonder how much of a role negative media representation of these ‘other’ autistics plays in exclusionary practices by both society and segments of the neurodiverse community itself, especially if media continually shows you mainly in the context of meltdowns, or in other words as “visual disturbances” (Ugly Laws) that better be tucked out of sight. 


Worth does not have to be defined by how productive you are seen to be or how much you can contribute to the economy. But I am hopeful ALL AUTISTICS (the ones who aspire to higher education and aspire to work) will get to higher education and WORK at the job they want to work at. That some don't have to "settle" or be "steered" towards minimum-wage type work because society (which apparently also includes a segment of fellow neurodiverse individuals) think your life has less worth than theirs. 


Though we may not have all the solutions and are still working on the "How",
the message I want to send to ALL autistics is:


ALL does not mean SOME. 


ALL autistics have the right to any benefits/policies derived from the hard-won-struggles of the disability rights movement. 

ALL autistics have the right to access supports, and to spaces and opportunities you aspire to

ALL autistics have the right to Belong.

ALL autistics have Worth. 



(PS: The better parts of the CAN conf are in this post.)

Autism Solutions Month


We are way beyond talk of Awareness, way beyond talk of Acceptance, way beyond talk of Inclusion

We need TRANSLATABLE SOLUTIONS that actually assists us.

And we need it now. 

I'm calling April,  AUTISM SOLUTIONS MONTH





Equanimity is the wisdom that sees through the illusion of our fears

Towards a more humane society. #MentalHealth. Contemplation, one line a day.

 

The world needs more kindness. Be the change you wish to see

Vestibular, Proprioception in Autism

Lay summary:  Go to any Occupational Therapist and you are bound to hear the words vestibular and proprioception, sensory diet at least a few times.  

Why is this important: Understanding the role of sensory processing difficulties and the sensory systems involved (such as vestibular, proprioception, and somatosensory body mapping) can be helpful in developing effective interventions and support strategies for autistics.

EMPATHY

Towards a more Humane Society.  Contemplating one line each day on it. #MentalHealth. This month is Empathy 


Empathy 
-Hari Srinivasan

Empathy doesn't just change the world, it changes us.
Empathy is the antidote to judgment.
Empathy is the fuel that powers kindness.
Empathy creates the space for true connection to happen.
Empathy is the ability to hear the unspoken and see the unseen.
Empathy is a muscle that grows stronger with use.
Empathy is not a feeling, it's a choice to listen with an open heart.
Empathy is not just a trait, it's a way of life.
Empathy is the foundation of all meaningful relationships.
Empathy is the art of putting yourself in someone else's shoes.
Empathy is a powerful tool that allows us to connect with others on a deeper level.
Empathy is the magic that turns strangers into friends.
Empathy is the ability to understand without judgment.
Empathy is the bridge that closes the gap between us and them.
Empathy is the light that shines in the darkness of misunderstanding.
Empathy is the heart's way of saying, 'I see you, I hear you, and I feel you'.
Empathy is the key to unlocking the door to compassion.
Empathy is the lens through which we see the world with a different perspective.
Empathy is the art of caring for someone else's feelings as if they were your own.
Empathy is the oxygen that breathes life into relationships.
Empathy is the secret ingredient that makes kindness so powerful.
Empathy is the currency of connection.
Empathy is the glue that holds us together in times of difficulty.
Empathy is not just a feeling, it's an action that can change lives.
Empathy is the foundation of true understanding and acceptance.
Empathy is the art of listening with your heart.
Empathy is the superpower that allows us to connect with people from all walks of life.
Empathy is the gift of truly seeing and being seen by others.
Empathy is the art of seeing with the heart and feeling with the soul.

See posts for other months. 
Jan [JOY] Feb [EQUANIMITY] March [EMPATHY] April [KINDNESS]

Propananol

Propanaol has come up in lectures in my Cell Neuroscience course this sem. Of personal interest to me, as its use has become prevalent in the autism population. My last set of docs at Stanford said they preferred its use as it has less side effects compared to other drugs.  I have mixed feelings about it effectiveness in my case but I've heard its helping a number of other autistics.

The use of Propranolol (brand names - Inderal, Hemangeol, & InnoPran XL) in autism is actually off-label as some research has suggested that propranolol may be helpful with anxiety, social withdrawal and repetitive behaviors. More research is needed to fully understand its effectiveness in autism.

Some common side effects of propranolol include fatigue, dizziness, cold hands and feet, slow heartbeat, and trouble sleeping. More serious side effects include wheezing, depression, and liver problems.

One concerning side effect is memory impairmentSo I have to wonder about its long term impact as we age, as many autistics are on it for many years and years. Are we looking at short term gains and compromising our long term health compounding health issues that already accompany old age. 

Empathy is the antidote to judgement

Towards a more Humane Society. Contemplation, one line a day. This month Empathy


 

ASA Press Release




 I get quoted in this press release.




The Autism Society of America is taking direct action at a national level on multiple priority issues that impact Autistic individuals. In particular, the organization is highlighting the importance of passing legislation that provides additional funding for home and community-based services (HCBS) and addressing employment disparities. This includes the Better Care Better Jobs Act and the HCBS Access Act.

“The current system of supports and services are set up such that there can be a sudden stop in services for the most absurd of reasons. Such policies need to change,” states Hari Srinivasan, an Autistic student at Vanderbilt, and member of the Autism Society’s Council of Autistic Advisors. “I find myself in this strange situation where the PhD stipend makes me ineligible for SSI, which in turn is linked to all state-funded disability supports and disability health insurance that I have relied on all my life. My significant Autism challenges and required supports, did not magically go away in graduate school. It is like a financial penalty on the disabled person to want to aspire for higher education and the pursuit of the American Dream.”

I want to relate this back to what the late Judy Heumann said in her 2019 interview with me for the Daily Cal [post on unedited longer interview], [Daily Cal article]

"There is currently a huge legislative disincentive for people with more significant disabilities who depend on services — such as Medi-Cal health insurance, Social Security and personal attendant services — from being productively employed. She does not want to hear stories similar to that of her friend who had to turn down a job she was well qualified for because of the fear of losing these crucial services. She would also like to see legislative policy changes so that employers see disability as just another diversity category." - Daily Cal 11/26/19




Empathy is the fuel that powers kindness

Towards a more Humane Society. Contemplation, one line a day. This month Empathy




 

Benzodiazepines and Barbiturates



Benzodiazepines

In class today, we studied pharmacology of GABA-A receptors, specifically Benzodiazepine's. Of personal interest as I've been on lorazepam (fast acting for agitation, mood swings) and clonazepam (longer lasting). Unfortunately the body develops a tolerance and these don't work anymore.

Nashville next stop in Senseless School Shootings

This time a young white 28 year old female ex-student, walked into an elementary school with assault weapons and just shot 6 people, 3 staff and 3 kids aged 8-9. What a horrible tragedy.   

Why is the US the ONLY country in the world where young kids are getting shot in their own schools every few months? That too with assault weapons. 

This does not make sense. I wonder at the need to even own assault weapons when you live in a city. A gun makes remote sense maybe if you were living in the midst of the woods with a grizzly bear or packs or wolves on the loose. 

Just last week our professor had mentioned how suicide rates dramatically increased amongst women who's partner/boyfriend owned a gun. Why is there such an obsessive need to hand out guns to just about anyone so easily in this country. 

Vanderbilt University Medical Center, located just 4 miles from the school was where all the children were sent - already dead on arrival. How does a hospital emotionally prep for "emergencies" like this?

https://www.npr.org/sections/health-shots/2023/03/31/1167375561/nashville-school-shooting-vanderbilt-hospital