Improving Accessibility
Access to Meaningful Work
Important Points
My Op-Ed in Fortune on Hybrid as Accommodation
Hari! Great article highlighting an important issue that is impacting workplaces and activities like conferences nationwide. I will share with colleagues who are working on this issue.
Well done, again!
Wonderful article, Hari! Thank you! I shared it with my husband, who is a business owner and has chosen to keep the company remote post-pandemic. And I shared it with my son, who is a neurodiverse activist who has many friends with a range of neurodiversities. Really appreciate you publishing your perspective.
Love it
This is great Hari! We'll add this to our social media queue.
Congrats on this outstanding, informative op-ed!
Great article, congratulations!
Congrats on this compelling piece of advocacy! I've just tweeted about it.
Fantastic piece, Hari. I love your openness—I learn so much from your writing.
Hi Hari, Great article on an important topic that’s very relevant to all of us nowadays!!
Great Op-Ed Hari! It’s super interesting and compelling!
Great article!'
Thanks so much for sharing Hari - an important article
Hi Hari!. Congrats on this compelling piece of advocacy! I've just tweeted about it.
Hi Hari, Congrats on this outstanding, informative op-ed! All the best,
Thanks for sharing this good paper.I love it
Love it
Thanks so much, for sharing this, Hari! Great article highlighting an important issue that is impacting workplaces and activities like conferences nationwide. I will share with colleagues who are working on this issue.
Hybrid is an easy accommodation
Autism after 21 Day
- Approx 1/3 of autistics who got access to mainstream ed are put on a diploma track in high school and have the opportunity to make their way to 2/ 4 college, at age 18. They join the swelling ranks of other late-dx autistics and face challenges and barriers that come with adulthood.
- Almost 2/3 of autistics who are dx in childhood remain in the special education all through their ed years.
- At age 18, they get another 4 years of what is called Post Secondary Program; located either in segregated facilities/schools, in the school district itself or more recently as programs run on university campuses so they happen in the same space as college-aged peers; though the programming may be different. At the end of the programming, they receive a Certification of Completion.
- IDEA protections end at this point. This is also the services cliff where all previous services.
- Their options are a series of adult day programs, upto age 50 and then 50+ years. These day programs again have a range of quality - from real job coaching to mere babysitting but there is far less state oversight of quality. There is a shortage of good programs. And as usual, much like special education itself, programs only want the "easy autistics". So where do the rest go?
- This is a HUGE problem, as families are suddenly handed back their adult child and told to go figure out what to do, from caretaking to daytime programming to housing and staffing, funding to figuring out pretty much everything. Many YA autistics have signifiant medical and other communication needs which can get aggravated with age with no real supports. The onus pretty much falls to the family to figure out what to do.
- The challenges faced compound for autistics who have higher support needs yet had somehow managed to access mainstream education and even make it to college. Its like straddling two world, as they face barriers in both world - neither of which knows how to support you or wants to include you. Its almost assumed you must be in one of the other other. I have to question this assumption. Instead why can we find solutions?
- Some of these barriers and challenges are unique to each space while others are common across the spectrum. The point being that adulthood in autism is not easy and we need to be thinking of solutions that helps each group and across the board.
April 13 is Autism Adolescence Day
Recognizing the transitions that come with adolescence in autism, along with the current inadequacy of needed supports, care and services. Translatable solutions are needed now.
- Social Isolation/Loneliness, Social Difficulties, fewer friendships/social contacts, lesser time spent on social activities (1,2,3)
- Mental health, suicide ideation and NSSI
- Bullying and victimization
- Navigating educational system & workplace due to social and communication difficulties
- Seizure onset 15% (compared to 0.5 - 1% in general population) (4).
- Higher prevalence of atypical or non-convulsive seizures in autistic teens compared to non-autistic (5).
- Increased prevalence of epilepsy in autistic teens (11.4%) compared to 0.5% in general population (6).
- Sleep disturbance at 50-80%- insomnia, nightmares, and irregular sleep-wake cycles (7).
- Sensory sensitivities at 88% (non-autistic teens 58%) (8).
- GI symptoms in autistic kids compared to non-autistic kids. In a 2014 study (9) figures are 43.5% compared to 18.1%. In a 2010 study (10), figures are 46-85% compared to 9-10%). Which means the prevalence is higher in autistic teens as well. 'Autistic teenagers at increased risk for anxiety, depression, and other mental health conditions.
- Co-occuring condition in 70% of autistics - anxiety disorders 41%, ADHD 31% & mood disorders 16% (11).
- Nuero-inflammatory markers in autistic teens
- Obesity 22.4% (general population 15.6%) (14)
- Asthma 22.2% (general population 12.8%) (15)
- Allergies 23.9% (general population 18.4%) (16)
Troubling Ableism in Neurodiversity
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." |
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
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.
Historic gains in disabled employment during the pandemic.
Takeaways from CAN conference
College Autism Summit 2022
Headed there in a bit. Looking forward. https://collegeautismnetwork.org/