In the context of disability and autism, all the terms discussed below takes on a unique significance as individuals may grapple with challenges that affect their physical, cognitive, emotional, and social attributes. Understanding one's own abilities, limitations, and unique traits can be an integral part of developing a positive self-perception and fostering self-acceptance and empowerment within the disability and autism communities.
Self-Perception: refers to how we perceive themselves, including our physical, cognitive, emotional, and social attributes. It involves forming an understanding of one's own characteristics, abilities, and behaviors. Self-perception can encompass both internal aspects, such as thoughts and emotions, and external aspects, such as appearance and social roles. It involves recognizing oneself as a distinct entity separate from others and the environment.
Self-Reflection: involves the process of introspection and examining one's thoughts, feelings, and experiences. It entails looking inwardly and exploring one's own inner world. Self-reflection allows individuals to gain insight into their beliefs, values, motivations, and behaviors. It often involves asking oneself questions, considering personal experiences, and analyzing one's own actions and their consequences. Self-reflection facilitates self-understanding, personal growth, and the ability to learn from past experiences.
Self-Evaluation: refers to the process of assessing one's own abilities, performance, and worth. It involves comparing oneself to internal or external standards and making judgments about one's strengths, weaknesses, and accomplishments. Self-evaluation can be influenced by various factors, including personal goals, social comparisons, and feedback from others. It plays a crucial role in shaping self-esteem, as positive self-evaluation can enhance feelings of self-worth and competence, while negative self-evaluation can lead to self-doubt and low self-esteem.
Self-Awareness: is the conscious knowledge and recognition of one's own existence, thoughts, feelings, and sensations. It involves being cognitively and emotionally attuned to oneself. Self-awareness allows individuals to monitor and reflect upon their own internal states, behaviors, and reactions in relation to themselves and their environment. It involves recognizing one's own strengths, weaknesses, values, and beliefs. Self-awareness is a fundamental aspect of self-consciousness and is essential for introspection, self-regulation, and social interactions.
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 neurodivergentpanelist who works for one of these large hiring companies.
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 ALLAUTISTICS (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.)
The speech I gave at the Spectrum At Cal event today
Hi everyone. My name is Hari Srinivasan.
Welcome to our in person 5 K run. We are so happy to be back, after the two years of uncertainty, that the pandemic had forced on us. I’m a senior here at Berkeley. I also teach a class on autism here at Berkeley.
I've been part of this amazing Spectrum At Cal for most of my time here and had the privilege of being president of this wonderful student organization, last year. Spectrum at Cal provided a community for me during my time here at Berkeley. Spectrum at Cal not only does autism outreach, both within and outside the campus, but also all manner of volunteering activities, and fundraising, which go right back to community organizations, that support individuals on the spectrum. Our organization has grown so much even during the time I've been a Berkeley. If you are a local organization interested in partnering with us, please do reach out to us. Let's make change happen.
I'm super thrilled to have spent my undergraduate years at Berkeley, which is really the birthplace of the disability rights movement. We boast of the first ever disabled students program, with other universities in the country and across the world, learning from us. It did start off for physical disabilities, but grew to include all manner of disabilities.
Today, Autism, is one of the fastest growing neurodevelopmental disabilities. Autism in all its forms, has a voice and we want to make it heard. Did you know my friend David, and I are the first, and only two non speaking autistic students to be admitted to Berkeley. It goes to show that autism too, is a diversity category, with the wide range of neurodiverse minds, that come with it. Autism is not a one size fits all disability, so we need to be flexible, and open minded to accommodate everyone, even the most marginalized amongst us.
What you're hearing, is my text to speech voice, as I am a minimally speaking autistic. I need to use alternative technology for most conversations, as I can only speak a few basic words. Technology is not perfect, and not always intuitive to use, but it helps me get by. It is unfortunate that, society has somehow conflated cognition with the ability to be able to use your mouth muscles to talk. Which is just an ill logical idea, and rather ridiculous really.
As a result, we nonspeaking autistics are generally not thought to be, worthy of education, let alone college. We face tremendous gatekeeping of opportunities in all manner of areas, all our lives. Everyone deserves the same opportunity of education, inclusion, and belonging.
Every life has worth. I repeat, every life deserves worth.
I've personally very proud of the t-shirt, that Spectrum designed last year, which I am wearing. We all belong. We all belong. You belong and I belong. And belonging is an idea, I'm very passionate about.
There is a big difference in the idea of awareness, acceptance, inclusion and belonging. Awareness is passive, which leads to some sort of acceptance, or what I like to think of as, tolerance of our presence. Inclusion for most part means, being allowed to exist in the same space as our non disabled peers. It's like sitting in the same classroom, as your non disabled peers, but both of you are on parallel tracks that never intersect.
But Belonging is really the key, where you feel you are a part of a community.When your life is seen as having worth. Where you belong, and I too belong.
Only with more exposure to all manner of autistics, will there be a change in mindsets, and greater belonging. It can be a win-win for all.
The diversity of autism, is like a cocoon, that morphs into all sorts of unexpected colorful butterflies. If you notice our logo is a butterfly. The butterfly effect, says a small local change, can lead to profound, and complex changes around the world. The two butterflies intertwine, and spread out their wings. That is what you are all doing here today by participating. You are all part of the butterfly effect, that will change the way autism is perceived, understood, and accepted. And how we can all belong. If there is just one thing you got out of what I said today, go home with the idea of promoting belonging.
Welcome again to Spectrum at Cal's, 5K run.
A big shout out to my fellow spectrum members and to all the amazing volunteers, who have helped put this wonderful event together.
Autism Acceptance is not just acknowledging our differences and wearing a
ribbon every April, but also saying I like you just for being you. That
I believe and will act in a way that indicates that your life is of
worth to me and to the rest of society - Hari Srinivasan
Acceptance and Inclusion of disabled people into all walks of society is no doubt an important first step.
But what we need goes beyond inclusion. Inclusion means just existing in the same space as non disabled people.
Disabled people need to not just be included, we need belonging. Belonging is a sense of community, where you are accepted as an equal member of the group and where your life is seen as having worth.
Belongingness in society, is I think, what we all yearn for at the end of the day, whether we are disabled or not.
Starting today, let us all strive together towards Belongingness.
I am an “Indian-American;” a hyphenated-American in a land of millions of other hyphenated-Americans. Even the original inhabitants, the “Native-Americans,” have not escaped the hyphen. Over the years the hyphen has become a proud celebration of the American in us and cultural heritage that we add to its salad mix.
