Autistic Inertia

[Concepts in Sensorimotor Research]

Newton's Law of Inertia

The general law of inertia, also known as Newton's first law of motion, states that an object at rest will remain at rest, and an object in motion will continue moving in a straight line with a constant velocity, unless acted upon by an external force. This means that an object will maintain its state of motion (either at rest or in motion) unless some force is applied to change it.

Autistic Inertia

In Autistic inertia we draw on those parallels to describe the difficulty that some autistics experience in starting tasks and stopping tasks, whether it with reference to their behavior, thinking or attention to task. 

• An object at rest will stay at rest: This is the difficulty in starting tasks.like you are almost freezing and you need some external kickstart to achieve takeoff velocity to get that motion/task going.  Some of this could be due to catatonia [post on catatonia].
• An object in motion will stay in motion: The is difficulty with stopping tasks. Once you get moving, - its difficult to end whatever you are doing, so end up in this OCD loop of repeated  unproductive thoughts or action (some forms of stims are OCD too).
• other examples include difficulty with
• Transitioning between tasks, 
• Adjusting body movements and thoughts to suit a new and rapidly changing environment 
• Staying on task, maintaining attention 
• Transitioning between paying attention/focus mode to non-attention mode which is also needed at times. 
• Making decisions, planning, following through
• Anxiety, Depression

Part of your mind is aware you need to be doing starting/stopping/transitioning/planning but you are unable to initiate that action and remain stuck. All of this difficulty in initiating and stopping actions is mentally and physically exhausting as your body feels at war with itself.  It takes up more spoons [post on Spoon Theory] and  can contribute to autistic burnout [post on autistic burnout]. 

Causes

Autistic inertia can be caused by a number of factors, including sensory overload, motor-apraxia, movement-issues, body-coordination issues, executive dysfunction, and anxiety. 

Autistic inertia can make it difficult to complete tasks, meet deadlines, and maintain a job or school schedule. It can lead to autistic burnout [post on autistic burnout]

The flip side is that this inertia can also help with hyper-focus which is an advantage in terms of learning a specific area. 

Misconceptions

• Autistic inertia is often misunderstood as laziness, non-compliance, task avoidance, lack of effort or due to lack of motivation. 
• Many of these concepts in autism and neurodiversity are often though to apply to only those who have low/no support-needs. Spoken communication ability is not linked to inertia. In fact inertia may be even more complex in autistics who have movement-disorder-like-issues, apraxia, sensory dysregulation and body coordination challenges.

What can we do to help

• Put external assistances in place where possible to ease transitions. Whether its a reminder from others or something that you can put into place on your watch or calendar depending on context. And the amount and intensity of assistance varies from individual to individual. 

Related Terms: A Chara ,    Allistic,    Aspie,    Atypical,  Autistic Burnout,  Autistic Inertia,  Catatonia,   Crip Time,   Critical Disability Studies,   Disability Justice Movement,  Disability Rights Movement,   Disability Eugenics,   Feeble-Minded,   Imbecile,   Inspiration Porn,  Masking/Camoflauging,   Microaggressions,   Neurominority,   Ofa Ahi Latu,   R-Word,   Savant,   Spoon Theory,   Takiwatanga,  Trains,  Ubuntu,    Ugly Laws,   Upstander

Happy Mother's Day

 Dedicated to the EXTRAORDINARY MOMS and DADS and PARENTS out there, 

on behalf of your extraordinary child.  

You Never Gave Up on Me

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.

------------------------------------------------------------------------

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.

Autism after 21 Day

Does Autism Magic away in adulthood?

Where are there pediatric Autism Clinics in all hospitals but no Adult Autism Clinics?

Why is there a Services Cliff at Age 21, when any services (even if they are inadequate) received during childhood comes to an abrupt end with no replacement or continuation of supports and services. 

IDEA protection end, with no equivalent replacements and supports

There is URGENT NEED for translatable solutions and supports for the ever increasing numbers of autistic adults. 

End of IDEA protection afforded during the Ed years. The yellow school bus stops coming. 

• 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. 

Where do the behavior autistics go?

In this month of autism acceptance and autism belonging, I want to point to a very concerning issue. 

When your disability is TOO VISIBLE, you are made INVISIBLE by society, warehoused somewhere where you can be out of sight and out of mind of society. 

This is the plight of many adult autistic peer friends that I know. The adult autism world of inclusion and belonging, only wants the good patients. Special education had never wanted "behavior kids - the ones with meltdowns, aggression and SIBs", so will just house them in some classroom or NPS, ready to spit them out at age 22 at which point their legal obligation ends under IDEA. 

I truly believe that there is a biological basis to all this SIB, aggression and other behaviors. There also seems to be confusion that such behaviors are seen only to those with low IQ or lesser speaking ability or whether you have access to communication.  I know an equal number of autistics, considered "moderate" or "high" in childhood who reach exactly the same place by early/late teen-hood;  tossed between psychiatric facilities or stuck at home with their families. Most are heavily medicated with pharma cocktails that don't seem to work at all for autistic physiology.  

The adult autism world does not want these "behavior autistics" either. Adult Day Programs (ironically meant for autistics) don't want them, even Group Homes for autistics want only the 'well-behaved' and easily manageable ones. 

Let me give you an example of 2 peers that I know -  one sits in the corner all day and is regarded as a model student by that Adult Day Program. The other peer is at home with his aging parents as no day program will take him - "too much behaviors." And he is just one of the many dozens I personally know and grew up with in this scenario.

Behavior therapy agencies will tell the family that that autistic is "not a good fit" for their program. If behavior therapy agencies don't want to help with behavior, then why is the  word "behavior" in their name at all. Autism professionals too will find PC alternatives that essentially say "not a good fit" for the autism they don't want to work with. 

Autism Clinics at major hospitals too, end at age 18. Did the autism and behaviors magic away in adulthood. 

Essentially the entire autism professional space is rending such autistics even more invisible. 

And doing such a fantastic job of it that the other autistics (invisible disabilities/neurodiverse) don't know or believe our existence.  

In a recent twitter post an adult autistic pointed to lack of numbers of such adults as evidence that they don't exist - and since she herself had started to talk at only at age 3 after therapy; it must mean that ALL autistics must have regained speaking ability and inclusion sometime in childhood. 

Are you really surprised at this. When you are out of sight is out of mind of society; it also means nothing need be done to help.  And it merits some societal attention only when it makes it to the news in a dramatic fashion such as in the article below which will be lost in the in the quicksand of short public memory. 

And did I mention, it is incredibly hard to even find support staff as there are enough "easier" adult-autistics clients job market. So staff don't want these autistics either; everyone wants the easy button. 

There is only waitlists or rejection at every turn. 

Where are the services and supports for these adult autistics? What is the long term outcome? What is the plan?

It does not have to be like this. I truly believe that there is a biological basis to all this SIB, aggression and other behaviors.  Where is the biomedical research that looks for answers  as to what's going on at a physiological level so that we can work on targeted solutions. Given that traditional pharma is not working, when are we going to get targeted interventions and pharma that actually work with autistic physiology?

How can there be inclusion and belonging for these autistics unless we find solutions to some prior steps first?

Why is this not seen as an urgent need in autism research? 

And to the growing numbers of Neurodiverse community out there, the action I request of you is -  Include everyone, including the marginalized autistics. Help find solutions to these issues so that every autistic can be part of the dream of Inclusion and Belonging. 

https://www.rgj.com/in-depth/news/2023/02/07/months-at-reno-hospital-young-man-with-autism-has-nowhere-else-to-go/69860556007/

 

Troubling Ableism in Neurodiversity

Written Oct 13 22. Still ironically relevant. 

===========

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.)

ASA Press Release

https://autismsociety.org/press-release-autism-society-of-america-is-calling-on-congress-to-address-national-issues-facing-the-autism-community/

 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

Informal Removals

This is so deja vu for me. 

Never mind even the struggles involved in getting access to general ed classrooms, 

even special education classrooms only want the Good Patients. 

=================

https://www.nytimes.com/2023/02/09/us/students-disabilities-informal-removal.html?fbclid=IwAR36fyuIXrWPV7QZMxdeHt_HPxYJy9___BwxYS0k7YIEKBarCdHdrxEAW4U


"During her son’s elementary years, Ms. LaVigne was called almost daily to pick him up hours early because he was having “a bad day.” By middle school, he was only attending an hour a day..."

"...tactic that schools... use to remove challenging students with disabilities from class. The removals — which can include repeated dismissals in the middle of the day or shortening students’ education to a few hours a week."

"In a report last year, the National Disability Rights Network, a national nonprofit established by Congress more than four decades ago, found informal removals occurring hundreds and perhaps thousands of times per year as “off-the-book suspensions.” The report said the removals also included “transfers to nowhere,” when students are involuntarily sent to programs that do not exist."

"The removals largely escape scrutiny because schools are not required to report them in the same manner as formal suspensions and expulsions, making them difficult to track and their impact hard to measure."

"continuation of the practice sends a terrible message to students and to school communities about which students deserve an education.”

They Can and They Will

 

On my facebook feed

Well said Paul - "... have a child or young adult with autism -ANYTHING is possible! Don’t let any teacher , family member “ friend” or anyone say your child can “ never” do x y or z . They can , and they will."

You Never Gave Up on Me

Dedicated to the EXTRAORDINARY MOMS and DADS and PARENTS out there, 

on behalf of your extraordinary child.  

You Never Gave Up on Me

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.

------------------------------------------------------------------------

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.

Supports, Skills & Society - Integral Adult Autism Conference

Keynote at this conference. 

https://integralautism.org/presenters

 

All that's wrong with this letter from RC

 All Indians MUST necessarily know Hindi,

ALL THAT’s WRONG WITH THIS LETTER on the Self-Determination Program from the CA Department of Developmental Services.

Someone at DDS decided that because I have an Indian origin last name.

1. My mother tongue must be HINDI; its not.

2. I MUST KNOW how to read the HINDI devanagari script. 

3. An automatic presumption on the part on the Hindi-speaking person at DDS who came up with this plan, that every person of Indian origin knows Hindi. 

Hindi is predominant in specific parts of the India only. Even if half the country knows Hindi, it marginalizes the remaining 650 million Indians in India who don't use it; the southern states being an example. There are 22 official languages in India… 

I found this very insensitive; almost reflective of the autistic/disabled experience where neurotypicals/nondisabled will assume that theirs’ is the only experience that counts. 

 Why are they making information on disability services more inaccessible here in the CA and wasting taxpayer money in the process. How many trees died in printing out thousands of these letters, how many mailman hours were wasted in the delivery these letters. 

Who got to decide this in CA; given its claim of being a more disability friendly state. This is really the last thing I expected in California. 

THIS IS WRONG!!

Together We Can Learn Conference

I was Keynote Speaker 

https://familiestogetherinc.org/2021twcl/#hari

Meeting the NeuroNav team

 So great to meet the NeuroNav team in person finally. I had done an internship with them remotely last year.  neuronav.org

Building a Bridge to the Future

 I was keynote speaker at  Missouri State 2021 Transition Training Institute 

https://dese.mo.gov/special-education/effective-practices/postsecondary-transition

https://www.eventsquid.com/event.cfm?id=12567

List of all Speakers: https://www.eventsquid.com/event.cfm?id=12567

Advocacy Day for Access and Independence

Event by ABLE-South Carolina

Recording at https://youtu.be/O4sd30F_9bk I'm on at 2:16:51 

Event Site: https://unlockingbarriers-sc.org/?fbclid=IwAR19-TeohFuvq2rnxLdCVObxGe1l8l5doQ0WT4s-upGSbSuf1cC-C_hCmb4#:~:text=Save%20the%20date%20for%20April,responsible%20as%20the%20pandemic%20continues