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

Blast from the Past - Vagaries of English Phraseology

 https://www.dailycal.org/2019/04/07/vagaries-of-english-phraseology-a-personal-essay/?fbclid=IwAR0NVna3qNWZLdQdG6RMm683Qp0ecFik7w3c35I7EZifyCVhAPdGLy4Zj8w

Haas Scholar Reception

A sleepy and groggy me attended the 430am Indian Time (4pm PST) reception for the incoming Haas Scholars. Over zoom of course this year. 83 people logged on alum, faculty, guest, and Bob Haas. In addition to the common programming, we fielded questions about our upcoming research in breakout rooms.

also no picture taken on the event. 

hsp.berkeley.edu/

CAT-Q measure to measure camouflaging in autistic females.

The Camouflaging Autistic Traits Questionnaire (CAT-Q) was introduced in 2019 by Laura Hull and colleagues. 

What is Camouflaging

 Camouflaging involves modifying one's behaviors, such as suppressing stimming, forcing eye contact, or preparing jokes or phrases in advance, to conform to societal norms or to mask traits that might be socially stigmatized. This behavior is reported to be more common among autistic females and is hypothesized to contribute to the underdiagnosis or late diagnosis of autism in this group. 

What It Measures

The CAT-Q aims to quantify the effort and strategies employed by autistic individuals (particularly focusing on females or those assigned female at birth, AFAB) to camouflage their autistic traits.CAT-Q measures the discrepancy between the individual's natural autistic behaviors and the behaviors they exhibit in social contexts, essentially capturing the social coping strategies that are not naturally aligned with their intrinsic autistic characteristics.

The CAT-Q is a self-report questionnaire, meaning that it relies on individuals' own perceptions and reflections on their behavior. Respondents rate their agreement with various statements about their social strategies and experiences on a Likert scale. This approach allows for the collection of subjective data on camouflaging behaviors, which are inherently internal and personal.

Submeasures: 

The questionnaire is divided into multiple items that assess various dimensions of camouflaging, such as:

• Masking: Efforts to hide autistic characteristics.
• Compensation: Strategies to offset difficulties in social situations (e.g., memorizing social scripts).
• Assimilation: Efforts to fit in with others by copying or mimicking non-autistic behaviors.

References

1. • Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M. C., & Mandy, W. (2019). Development and validation of the Camouflaging Autistic Traits Questionnaire (CAT-Q). Journal of Autism and Developmental Disorders, 49(3), 819-833. doi:10.1007/s10803-018-3792-6
   • Hull, L., Lai, M. C., Baron-Cohen, S., Allison, C., Smith, P., Petrides, K. V., & Mandy, W. (2020). Gender differences in self-reported camouflaging in autistic and non-autistic adults. Autism, 24(2), 352-363. doi:10.1177/1362361319864804
2. • Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular Autism, 9(1), 42. doi:10.1186/s13229-018-0226-4
• Livingston, L. A., Colvert, E., Social, A., Happé, F., & the EU-AIMS LEAP group. (2019). Good social skills despite poor theory of mind: Exploring compensation in autism spectrum disorder. Journal of Child Psychology and Psychiatry, 60(1), 102-110. doi:10.1111/jcpp.12886

Related Posts

Masking & Camouflaging.

https://uniquelyhari.blogspot.com/2021/09/cm.html

Triple Bind and Masking in Autistic Females

https://uniquelyhari.blogspot.com/2021/04/triple-bind-masking.html

Masking as an evolutionary advantage

https://uniquelyhari.blogspot.com/2020/04/masking-as-evolutionary-advantage.html

CAT-Q measure to measure camouflaging in autistic females.

https://uniquelyhari.blogspot.com/2021/04/cat-q-measure-to-measure-camouflaging.html

Dont Cant Wont - Masking Camouflaging

https://uniquelyhari.blogspot.com/2021/05/dcw.html

Kollu Paati

 This artwork from the 1920s-1930s, still in its original frame, was made by my Padmasini Kollu-Paati (great grandma) - died 1958. She was quite the entrepreneur, ran her small home based milk business, and has even made speeches to mobilize other women to join the Indian Independence Movement. 

Some of the relatives from that branch of the family run the Gandhi Ashram in Selam, Tamilnadu. Another aunt of my grandpa went off to live and do social work with Harijans in the villages, which is pretty progressive for a femail from a conservative Brahmin family of that era.

Fossil

 My late Raghavan Thatha liked to collect fossils. This is not a piece of wood but actually a fossil and as heavy as a stone. How cool is that. 

Harrapa Artifact

My late Raghavan Thatha (grandpa) worked in archeology for a while. Replica of an artifact - Harappan seal from the Harappa archeology digs from the time of the Indus Valley Civilization. 2600BC-6000BC

Tongan Kava Bowl

My late Raghavan Thatha (grandpa) also spent many years in Tonga. Tonga is one of the last remaining Polynesian monarchies in the world. This is a Tongan Drum and a Tongan Kava Bowl. Thatha & Paati (grandma) have been to many traditional Kava ceremonies.

Lunch Appetizer

 Lunch Appetizer was Corn Soup made by Paati

 

 

Watching Paati prep the soup. 

Tree Cup

Afternoon snack of Dosa with Muruga Sambar made by Paati, accompanied by Green Tea with Lemon and honey in a cup that's shaped like a tree trunk.

 

Remote Instruction, International Edition

So I'm in India for a few weeks. 

Remote Instruction, International Edition

Remote Instruction at the table your parent used during their schooling. No laptops back then!!

A Variety of Kozhukattai Experience

The tiffen scene in Chennai is quite interesting.

I had multiple varieties of kuzhutattai for breakfast. Kuzhukattais are traditionally steamed rice balls with sweet or spicy stuffing inside. They just got more creative. The white one is made with palm sago, there were ones made with Ragi (Millet) and also upma kuzhukattai.


A variety of spice and sweet Lip-smacking and finger-licking varieties.

Murunga's Three Feet Long

Freshly harvested Murunga Drumsticks (Moringa Olifera). Murunga's are loaded with good nutrients right from Vitamin C to antioxidants with many parts of the plant used in ayurveda meds. I've never seen a muruga drumstick this long before - its over 3 feet long. And these look fat and juicy too, when cooked.

I'm think I'm getting a yummy Murunga dish from Paati (grandma) tomorrow. Can't wait.

Competitive Cats

The cats at my grandma's place are seriously competitive. It saw me hugging grandma and demanded - as in meowing away loudly and pawing the rug and couch - to be be given room on the couch so it could get in on the love.

There are actually 2 cats here, one on each floor and each possessive about its territory. The downstairs one (Chinni) never goes up and vice versa for Feather. The upstairs cat is quite old and decides to meow away in the middle of the night for food.

And did I mention the visiting fellows. A couple of cats turn up at the backdoor several times a day and meow for food. My Paati promptly feeds them. These cats never venture inside else they face the wrath of the house cats.

They are too funny. LOL

Lifelong Learning

My Paati (grandma) likes languages and at 82 doing courses on conversational Sanskrit. Got distinction in her last exam too.

No cats competing for this Paati's attention. Lol

Healthy Idly's

Breakfast today was healthy Bajra Idly's

The Ubiquitous Masala Dosa

Evening tiffen was Masala Dosa with sambar and chutney served on a banana leaf

and filter "Kapi" (coffee) served in a tumbler and dabara (saucer)

April 15 - Tamil New Year
Happy Tamil New Year Everyone. Its the herald of spring.

My first Tamil New Year in Tamilnadu!!

An elaborate and delicious naivedyam lunch made by Paati (grandma) and Athai (aunt) with mor kuzhambu, kootu, 2 karamadhis, vadas, green mango pachadi, carrot payasum and more. Delicious and served on on a freshly harvested banana leaf from the garden.

It usually rains on Tamil New Year and the weather did not disappoint. Complete with Thunder. Rain is considered auspicious, means things will go well.

Where do the Autistic Crips Go?

In a few months, the California wildfires will be back.

We don't realize how much more disabling the climate change is for the disabled

Where Do the Autistic Crips Go?

I’m an autistic crip with sensory disabilities.

One of my many labels, too many to recount. 

Crips are not priority when natural disaster strikes.

2005 

... Katrina Disabled abandoned by caretakers

2018 

...Paradise CampFire, more of the same. 

We are ever the forgotten, not-accounted-for divergents. 

September 2020, 

...Bay Area Skies glowed red

Nuclear orange sky from countless wildfires. 

Evacuations were abound even with Covid around. 

It just was not safe to social distance at home. 

An autistic crip, I will just call him Zee 

Wildfires by his home, the air not fit to breathe.

He had legs to walk out, his was a different disability

But where would Zee go, evacuation is hardly easy

A shelter was not a place he could hang out. 

Sensory sensitivities, food allergies, social anxiety, compromised immunity. 

…. On top of sheer uncertainty. 

Where oh, where can autistic crips go?

Shelters are planned for the non-crip mindbody

Smoked filled air, but my home not in path of fire

Zee came, stayed a few days with me. 

It was not easy but it was better than a shelter.

Zee had a place to go for this round of emergency

The fires came close but his home did not catch fire. 

He was able to go back to his own home eventually

But where did the other autistic crips go?

Where will I go if this happens to me?

Next year, 

... the wildfires will be back.

Prepare and plan, says the authority?

Pack a bag with all that you need.

But...

How do you prepare for something like this?

How does one prepare sensory sensitivities and anxiety?

 

 

 

 

 

 

UN Panel for World Autism Day

I was on the panel for the United Nations observance of World Autism Day. Held on Apr 8 as Apr 2 coincided with Good Fricay. It is extra special to be on a UN Panel as my late grandpa used to work for the United Nations. This year the event focused on the right to employment with theme “Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World.”

When: April 8, 10-11am EST

Topic: Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World

Recording of Event at: https://youtu.be/diZhgcTBPgk

#UnitedNations #WorldAutismAwarenessDay2021

My responses from the event

CV: Hari, How has the pandemic affected you?

Hello world. My late grandpa was a UN executive, so it's really extra special to be on this U N Panel today.

The pandemic has presented both challenges and opportunities for many autistics like me.

Many autistics have a hard time with uncertainty and the pandemic has been like the ultimate uncertainty. There is also the disorientation due to the sense of a loss of time with each day of zoom meetings looking exactly the same.

Worldwide there has been a surge in mental health issues; the anxiety is compounded in autistics and often manifests as upticks in obsessive and repetitive behaviors, meltdowns, sleep disturbances etc.

On the flip side, while I miss the buzzing energy and life of campus, it's actually been a fantastic year for me, and I'm involved in so many projects and conferences now. For instance I just got selected as a Haas Scholar at UC Berkeley where I will be doing a year long research on autism.

Remote learning via zoom, has been ironically equalizing. In a large lecture class, everyone is on mute, even students who can talk. Control of the camera puts me in charge of the amount of atypical body mannerisms that others get to notice.

Remote work also reduces a lot of the anxieties around the constant societal need for physical social interactions, eye contact, and trying not to draw attention to my atypical mannerisms; all of which takes up extra mental effort and energy. So I’m actually able to get a lot more done now.

I also love that we are now able to seamlessly interact with people from around the world without the anxiety of travel. I did not think I would get to hear perspectives from Africa or Ireland like today for instance.

In the post pandemic world. I would love to see hybrid solutions for autistics so we get the advantages of both the remote and physical environments.

CV: Hari, Do you feel the pandemic has exposed discrimination against autistic individuals?

The pandemic exposed systemic flaws in societal attitudes. One is the lip service that was paid to accessibility in the pre pandemic world. For years the disability community has been asking for remote work or hybrid solutions as many faced access barriers in education and the workplace. We were told remote work was impossible. Yet it suddenly became possible overnight when there was a will for it. We can only hope that such benefits will continue in the post pandemic world with the virtual workplace the norm for many companies.

But we need to watch for a couple of issues. Who will decide who gets to work remotely and who does not?. Will the disabled community continue to be less protected?. And also that remote work will not result in greater isolation for the disabled community.

Some of us autistics benefited from zoom education but what has been troubling is that while regular education was able to transition to remote learning, hands on special education services abruptly stopped. Remote education or tele therapy did not work for many who need that physical one on one support and have other needs.

The disproportionate access to services meant that many autistics faced regression in skills that take time to build up like building independence in the community.

Adult autistics living in group residential settings were at higher risk for the spread of covid as well as medical rationing.

This is just a small list actually.

CV: And Hari, How do you think virtual job interviews during a pandemic affects autistic jobseekers??

Interviewers often form impressions of you in the first few minutes. Much as we would like to pretend otherwise, there is a certain societal expectation of the body language of a candidate. So I’m trying to gauge their mood, body language on top of worrying about my own atypical body mannerisms, eye contact and other sensory stimulation. There is a lot of mental and physical effort going into these extraneous things.

So virtual interviews could actually be a blessing in disguise. There is more control. A familiar physical space, the chair at the right height and you can position yourself and get comfortable well before the interview starts. Somehow the behavioral expectations are far less in the virtual world which means there is less mental effort. Virtual interviews are also more amenable to scripting which many autistics rely on. So I hope virtual interviews continue in the post pandemic world.

There is another thing I want to add on the topic of employment. It is disappointing that many diversity hiring initiatives by employers have only certain profiles of autistics in mind. We need to think about employment and accommodations for all autistics who want to work, irrespective of their communication levels and support needs. So that is why it's important that we start having these conversations not just in the US but around the world.

Tech rehearsal