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.
Weak Central Coherence Theory of Autism
Autism Lexicon: Weak Central Coherence (WCC) Theory
The WCC Theory is a cognitive theory of autism (cognitive theories try to explain how autistics think).
It suggests that autistics focus on noticing details but might struggle with seeing the bigger picture. This affects how they see and understand the world around them. This unique way of thinking brings both strengths and challenges, affecting everyday tasks, social interactions, and work or hobbies.
Read about WCC in more detail
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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
The end of Autism Month
April is Autism Acceptance 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? 😔
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 on my NSF Award
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
A kinder ABA is a therapist driving you to the point of frustration, then offering to hold your hand
https://link.springer.com/article/10.1007/s40617-023-00833-w
Good grief is all I can say.
Adding the prefix of "Kind" to something does not automatically make anything automatically Kinder. As is peppering a paper with the word "Kind" to sublimely influence you that it must be kind.
And a sample size of 4 autistics in the study makes this a valid method, how?
And what did this "kind" translate to exactly. when a therapist drives you to the point of a tantrum in the first place, then offers to hold your hand, and saying "I can see you are frustrated."
Is this a new marketing strategy by the (massive-profits with no accountability) ABA industry to make even more profits of desperate families.
Please don't joke around with studies trying to whitewash stuff. This is not helping.
Disability puts a whole new light on access
https://www.dailycal.org/2018/04/05/access-ramp-volunteering
Autism and the Cocktail Party Effect
Concepts in Multisensory Integration
The "cocktail party effect" refers to the brain's ability to focus one's auditory attention on a particular stimulus while filtering out a range of other stimuli, as when a person can focus on a single conversation in a noisy environment. This ability involves the auditory cortex and other brain regions that manage attention. The term was coined by cognitive scientist Colin Cherry in the 1950s.
For example, at a busy party with multiple conversations happening simultaneously, you are able to listen and respond to one person speaking to you without being distracted by the surrounding noise. This phenomenon highlights our ability to selectively attend to particular sounds in a complex auditory landscape. It's often studied in contexts involving hearing, neuroscience, and psychology, particularly in understanding how attention and the sensory system interact.
In autistics, the cocktail party effect may manifest differently due to variations in auditory processing and attentional focus. Autistics often experience atypical auditory processing, which can mean that separating speech from background noise is more challenging. This difficulty is sometimes referred to as auditory filtering problems with "auditory scene analysis." Research suggests autistic children show diminished performance in tasks requiring them to attend to speech in noisy environments compared to their neurotypical peers (Alcántara et al., 2004). This can contribute to the sensory overload many autistic individuals report in noisy or crowded settings.
These auditory processing differences are an essential consideration in understanding the sensory experiences of autistic individuals and underscore the need for tailored strategies in educational, social, and occupational settings to accommodate their unique sensory profiles.
The "cocktail party effect" refers to the brain's ability to focus one's auditory attention on a particular stimulus while filtering out a range of other stimuli, as when a person can focus on a single conversation in a noisy environment. This ability involves the auditory cortex and other brain regions that manage attention. The term was coined by cognitive scientist Colin Cherry in the 1950s.
For example, at a busy party with multiple conversations happening simultaneously, you are able to listen and respond to one person speaking to you without being distracted by the surrounding noise. This phenomenon highlights our ability to selectively attend to particular sounds in a complex auditory landscape. It's often studied in contexts involving hearing, neuroscience, and psychology, particularly in understanding how attention and the sensory system interact.
In autistics, the cocktail party effect may manifest differently due to variations in auditory processing and attentional focus. Autistics often experience atypical auditory processing, which can mean that separating speech from background noise is more challenging. This difficulty is sometimes referred to as auditory filtering problems with "auditory scene analysis." Research suggests autistic children show diminished performance in tasks requiring them to attend to speech in noisy environments compared to their neurotypical peers (Alcántara et al., 2004). This can contribute to the sensory overload many autistic individuals report in noisy or crowded settings.
The brain regions involved in auditory processing might function differently in autism, affecting how sounds are perceived and processed (O'Connor, 2012) . The auditory cortex may not effectively differentiate between foreground and background noises, leading to a potential overwhelming influx of auditory information. Consequently, this can make social interactions and communication more strenuous in environments that NTs might find manageable.
These auditory processing differences are an essential consideration in understanding the sensory experiences of autistic individuals and underscore the need for tailored strategies in educational, social, and occupational settings to accommodate their unique sensory profiles.
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