Thank you for such a powerful presentation, Hari! As a mother of an autistic child, I found your insights deeply resonant. I'm grateful for the opportunity to learn from it.
Rewind: Interactions with Planet X
Rewinding to something I wrote many years ago in high school.
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Interactions with Planet X
(So you want to help, but have no clue)
My fellow Teens,
You all probably know some people with disabilities. After all, it's fairly commonplace now. Words like Autism, Downs Syndrome and Cerebral Palsy abound in the news. You probably even feel sorry for them. But honestly, even a truckload of pity is not much use.
You probably are also "initially freaked out" at meeting people with disabilities. (This is a direct quote from a high school volunteer I know.) Maybe you want to help, but have no idea how and what.
Consider:- Once upon a time, we were all babies. Our life track was defined - preschool, elementary school, middle school, high school, college, job etc.
A UCSD sophomore was speaking of his college experiences to our SSE class last week. Many of his friends from Cupertino schools are with him in college, so his social circle remained somewhat homogeneous. That had greatly aided his transition from the small school setting to life on an enormous college campus. I imagine it will be the same for most of you. Most of you probably have friends you've known all your life and who will be with you in college.
Some of those babies however, ended up on a path that wandered off into the wilderness of disability. Years of therapy helped some get back onto a more typical path, especially if the right therapy was done at the right time with the right set of people who knew what to do. But there is no set formula and not everyone made a full or even partial turnaround. But biologically, the bodies kept growing and voila, they became Teens with Disabilities!
I speak not just for myself, but for all the others I've observed over the years.
The therapy years are behind most teens, parents are exhausted and most therapists are giving up. Not an attractive picture!
Many are headed into Homes and "residential facilities" after high school. Some are already in Homes. I had 3 classmates in 5th grade who came from a Home. The only time they got to go out, was if the school did outings, as the Home did not do that. All that my classmate Johnny ate at every meal, was cheese pizza - how healthy is that? Others, I know - post 18 and Indian - live at home with their parents.
A few may make it to community college or even a university. A fortunate few may even end up doing a job they like and lead independent lives. But there are always additional hurdles at every step.
Expectations are not high at this point. Job training programs, at most, target low level jobs. How exciting will it be to toss burgers, especially if intellectually you are capable of so much more? Frustration rides high, and this translates into more behavioral issues. As it is, being a Teen is an emotional roller-coaster for most of you. Just add on a whole suitcase of emotional and physical struggles!
Your world will open out as you go into college and beyond, while those of individuals with disabilities, may well narrow down. More doors shut with age. Ironically after age 22, govt. assistance and programs reduce significantly - just when we need it most.
We're surrounded by adults a lot; but most are paid therapists who last just 1-2 years. There is a high turnover of people, which is very emotionally distressing. Working and assisting teens or adults is not considered a desirable profession, so one cannot expect any intelligent company either, going forward.
Quality of Life however, goes beyond just basic care. It becomes a 'Lonely Planet X.’
So what was the point of telling you these depressing scenarios?
It is said that friends influence your character? This is the area that individuals with disabilities really fall short on. It's going to be a bigger problem going forward, as more of this growing population of children with disabilities become adults.
It is less your money that is needed, and more your humanity.
And it is not just about playing board games once a month at a center. That gets real boring by the 3rd month. And irritating by the 6th month, because by then the same games start to feel like therapy. And teens (disabled or not) don't want to be subjected to preschool activities like circle-time! Oh the sheer indignity of having preschool circle-time in some of the Special Ed classrooms, years after our typical peers had stopped doing them. Are you surprised that many adults with disabilities still listen to Barney and Sesame Street?
It is about getting involved in their lives. Being involved does not mean being physically there all the time either. In today's Internet World, there are many avenues of communication - Facebook, email, text, a phone call etc...
Tell them about your own lives so that through you, they can learn and experience more. You will be surprised at the insights you get into your lives when viewed through their eyes. Most are surprisingly sensitive and intelligent despite their outward body mannerisms. A person may have cerebral palsy and be dependent on a wheelchair. They may not even be able to respond. But their minds will eagerly lap up information and conversation. Don't expect responses, especially if the person has limited communication skills - just be there. They will never cease to amaze you or surprise you.
Get to know a few individuals and continue to be in their lives. The key is to be a constant presence over many years. Don't be a therapist who moves onto another client in 1-2 years.
Check in during your school vacations, and during your college vacations. Visit if you can.
Include them in some of your physical activities. Are you or your friends in a musical performance, band, team or play? Invite them to these - you will find no better cheerleaders. Do you belong to a group of some sort – you could find ways to include them at least some of the time. What do you do with your typical friends - do you just "hang out and chill.”? You'd be amazed at how many teens with disabilities long to do this but don't have the opportunity.
Don't assume they don't know academics just because they haven't been formally taught it. Academic subjects are just a matter of perspective sometimes. In light of other challenges, it just seems a lot more straightforward. Tell them about what you do - why you find certain subjects difficult or which teacher is really lousy or good.
It’s pretty hard to abuse drugs, smoke or drink if you are disabled. So you will in fact, be keeping very good company.
Be an advocate for them and watch out for them in their lives. Friends of this disabled adult I know on Facebook, keep tabs on her online activity to watch for online predators and the like. Most individuals will outlast their parents, so friends are important in their lives. As you become an adult, there will be many such opportunities for advocacy. Dealing with bureaucracy is tough for most; imagine the disabled adult who has to face it 24x7.
Consider - Pity is condescending, while Empathy and Friendship is Humanity.
In the end, it's a win-win scenario for both. You will fulfill a real need and make a difference. Man is defined by his character, not by his wealth or his social status. You will be amazed at how these interactions will shape your life.
Bring the Forgotten People on Lonely Planet X, back to the Humane Planet Earth.
You may or may not choose to do something about this issue, or not be able to do so now. But perhaps you will later in your life. All this is Food for Thought.
Words matter: Reframing neurodivergence in science, medicine and society
How we write and think about neurodiversity can have a profound effect on people’s lives; watch the webinar hosted by Cell Press and The Lancet.
The end of Autism Month
On April 30th there is a flood of emails and social media posts - all pointing to the fact that its the last day of autism acceptance month.
Does this mean that autism acceptance is not important for the remaining 11 months? 😔
Vanderbilt Brain Institute Graduate Student Directory
Just noticed I'm in the Grad Student Directory of Vanderbilt Brain Institute.
https://medschool.vanderbilt.edu/brain-institute/about-us/team-directories/#h2-graduate-student-directory
https://medschool.vanderbilt.edu/brain-institute/about-us/team-directories/#h2-graduate-student-directory
An endless cycle of labels in autism
Targeted interventions for autism don't need creation of more new labels.
The issues that need help, were present there before the label creation and still exist x years after the label.
In another 5-10 years, another new catchy trademarked label will appear
Solutions not more talk or more labels
I would like to see ACTION on ACTUAL SOLUTIONS - communication, biomedical physiology (physical/mental health), sensorimotor, policy, funding, myriad equity of access issues. Level the playing field so that ALL autistics can make use of opportunities. Thats quality of life.
Simultaneously reclaim and destigmatize existing labels so they can’t be used against you, instead of airtime and resources creating more and more new labels /terminology and then more airtime arguing about which is good/bad.
Simultaneously reclaim and destigmatize existing labels so they can’t be used against you, instead of airtime and resources creating more and more new labels /terminology and then more airtime arguing about which is good/bad.
Last Class at Berkeley
This day 2 years ago.
OMG. My very last undergrad class at Berkeley.
Berkeley Haas Scholars at work.
Shoutout from FCAI
The NSF GRFP is a tremendous achievement and a testament to Hari's hard work, dedication, and innovative research approach. As a neurodivergent individual, Hari brings a unique perspective to the field of Neuroscience, and his work, with its potential to make a significant impact on the lives of the community, is truly inspiring.
At the Frist Center for Autism and Innovation, we are committed to promoting neurodiversity and providing opportunities for individuals like Hari to flourish in science and engineering. We believe that neurodiversity is a strength, and we are proud to support Hari and other neurodivergent researchers in their quest to make a difference in the world.
On behalf of the Frist Center for Autism and Innovation, we would like to extend our heartfelt congratulations to Hari on this well-deserved honor. We are not just proud, but deeply appreciative of all that he has accomplished and look forward to seeing all the amazing things that he will achieve in the years to come. Hari is an inspiration to us all, and we are grateful to have him as a part of our community.
hashtag#Neurodiversity hashtag#Neurodivergence hashtag#ASD hashtag#Autism hashtag#Strength hashtag#SocialModel hashtag#NSF hashtag#GraduateStudent hashtag#Fellowship hashtag#NationalScienceFoundation hashtag#GraduateFellowship hashtag#Congratulations hashtag#Awards
Autism Space seen as profit making space by Private Equity
Autism Space seen as profit making space by Private Equity
This is a continuing and troubling trend in autism.
'...private equity investments per year tripled or quadrupled from 2018 to 2021 compared to 2015.
...expected investment to continue at breakneck speed
“...They needed to start showing profits and revenue that match their valuation. … So at some point, [investors] need to start seeing a return on their investment,”
...autism therapy space could be at the point of the investment life cycle where investors are pressuring operators to shift from scale to efficiency and profitability.
...opening clinics that reach targeted patients while being “financially healthy,” Marsh said.
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