April is Autism Exhaustion Month

 

Hybrid is an easy accommodation

To give context to the above post, Sascha was one of the students in my Autism DeCal Class at UC Berkeley. I was happy to be able to accommodate her request of attending the class remotely that semester and extending that hybrid option to all the students in the class as well. Hybrid is such a simple and basic accommodation really, especially in a post pandemic world where zoom became a very viable option of attendance. 

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And to hark back to another teacher who paved this way for me was Instructor Martha Oral (English 1B) in my community college when I was about to drop my fall semester as I would be unable to attend due to health reasons. Martha on her own initiative talked to the Tech support and organized Cisco Webex on her laptop which one student monitored during her class so that i could attend that class remotely. This was before the pandemic made Zoom an everyday word. 

 

Alexithymia and Autism

Alexithymia is characterized by difficulty in recognizing and expressing one's emotional experiences.

The term was first used in the 1970s by psychotherapist Peter Sifneos to describe a group of people who had difficulty expressing their emotions. They may also be more prone to stress-related issues and have difficulties coping with stress in general.

Studies find the prevalence of alexithymia in autistics to range from 50% to 66% compared to a 10% prevalence in the neurotypical population (1,2).

1. Alexithymia in autistics has been associated with several negative outcomes.Social communication difficulties: Difficulty expressing emotions and interpreting the emotions of others, can interfere with social communication; which may be particularly pronounced in autistics, who already experience social communication difficulties (3).
2. Reduced quality of life due to the negative impact on social relationships (4)
3. Increased anxiety and depression: One study found that alexithymia was a significant predictor of depression in autistic adults (5).
4. Greater risk for negative outcomes: In a longitudinal study of autistic children those with higher levels of alexithymia were found to have a higher risk for negative outcomes such as anxiety, depression, and behavioral problems over time (6).

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A Plain Language Version

What is Alexithymia? Alexithymia is when someone has a hard time recognizing and talking about their own emotions. They might also find it tough to cope with stress and are more likely to have stress-related issues.

History of Alexithymia The term "alexithymia" was first used in the 1970s by a psychotherapist named Peter Sifneos. He noticed that some people had difficulty expressing their emotions and gave this condition a name.

Alexithymia and Autism Studies show that alexithymia is much more common in autism. About 50% to 66% of autistics have alexithymia, compared to only about 10% of people without autism.

Effects of Alexithymia in Autism

1. Social Communication Difficulties: Autistics with alexithymia have an even harder time expressing emotions and understanding others' emotions, making social interactions more challenging.
2. Reduced Quality of Life: Having trouble with social relationships can lower overall happiness and satisfaction in life.
3. Increased Anxiety and Depression: Research shows that alexithymia can lead to higher levels of anxiety and depression in autistic adults.
4. Greater Risk for Negative Outcomes: In a long-term study of autistic children, those with higher levels of alexithymia were more likely to experience anxiety, depression, and behavioral problems as they grew up.

Understanding and addressing alexithymia in autism is important for improving social interactions, mental health, and overall quality of life.

Propagnosia and Autism

There is some research suggesting a possible link between prosopagnosia  and autism. However studies are correlational in nature and do not establish a causal link between prosopagnosia and autism

What is Propagnosia

Propagnosia (face blindness), is a neurological condition that affects a person's ability to recognize and remember faces. There is difficulty recognizing familiar faces, such as those of family members, friends, or colleagues. They may also have difficulty recognizing faces in photographs or on television.

Do autism and trains go together?

April is National Autism Month. 

Do all autistics like trains? The answer may surprise you. 

While it is true that some autistics may have strong interest in trains or transportation systems, this is not a universal trait among all autistics.

The origins of this autism stereotype are unclear, some guesses. 

In our own time and space

April is Autism Solutions Month. 

Came across a new word today. 

Takiwatanga is the Te Reo Māori word for Autism. It means "in their own time and space. " 

(The Māori are a Polynesian ethnic group of New Zealand and Te Reo =language)

 

Takiwatanga - what a nice way to phrase autism, cuz we often don't follow the expected developmental timelines, even within what autism is 'supposed' to be like, which has left me pretty confused and flustered over the years. 

"takiwa," = "area" or "territory,"

"tanga," = "to be in a state of."

So, Takiwatanga can be translated to mean "in their own time and space. " 

The word Takiwatanga is now used both in the Maori community and the larger community in New Zealand to refer to autism. It reflects the Maori cultural value of respecting and acknowledging the importance of each person's unique perspective and way of being in the world.

Boston Globe Op-Ed

https://www.bostonglobe.com/2023/04/22/opinion/autism-disability-person-first-language-identity-first-language-linguistics/

My first op-ed in a major media newspaper on an issue that still seems to dominate autism conversations. its time to put it to rest and move onto spending time on translatable solutions for all autistics.

The article discusses the linguistic controversy surrounding the use of identity-first language (e.g., "autistic") and person-first language (e.g., "person with autism"). I argue that the autism community can learn from other disability communities and embrace both types of language. The key takeaway is that it is not an either-or situation, and that the most important thing is to use language with empathy and respect.

Jon Stewart at Vanderbilt.

Great way to end my First Year of Grad School. 

A talk on HealthCare Advocacy by the amazing Jon Stewart in Langford Auditorium

Lots of takeaways, will write about them later. 

 

Media Mention

 

Media Mention

Today someone reposted a FB comment of mine along with a link to link to one of my columns in the Daily Cal . http://www.dailycal.org/2018/04/19/o-body-where-art-thou/


"I ran the explanations by my neuroscience Prof at Cal (David Presti) to make sure there were no factual errors. He thought I had correctly pulled in a lot of theories on the neuroscience of autism along with a wealth of data and analysis from my experiences and told a compelling story. In final article, had to cut out a couple more concepts due to word limit."

Quite serendipitous that this article was written during an Intro to Neuroscience elective with Prof David Presti (this course was for all majors so nothing like the extra-tough Cell Neuroscience this sem). At that time I was happy I got to go to college at all and soaking it all in. Who knew that I would end up even making it to grad school (today is end of year 1) and getting to do contribute to research in that area too!! Deep gratitude to all who supported me this last year.

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. 

The Grandmother of the Disability Rights Movement turns 103

 Zona is the mother of Ed Roberts, who started the very first Disabled Students Program at UC Berkeley as well as starting the Independent Living Movement. 

So if Ed is the father of the Disability Rights Movement, she is the grandmother behind it all. 

https://alumni.berkeley.edu/california-magazine/online/meet-zona-roberts/?utm_source=mag-newsletter&utm_medium=email&utm_campaign=california

Noise Cancelling Headphones and Autism

Noise Cancelling Headphones are often seen as the solution to sensory overstimulation in autistics. 

Pop on a pair of headphones. And Voila, the autistic problem is solved like magic (sarcasm intended).

Are they really the solution they are touted to be? The answer may surprise you.