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. 

April 18 is Regressive Autism Day

Regressive autism / late-onset autism /acquired autism, is where a child develops typically in early childhood meeting all developmental milestones, but then experiences a loss of previously acquired skills, at around 1.5 years to 4 years. Estimates of regressive autism range from 30 - 44% of kids who get diagnosed with autism in childhood. (1,2,3)

This loss/regression is especially evident in the areas of social communication and interaction; such as loss of interest in social interaction, loss of eye contact, loss of spoken language, loss of motor skills and the development of repetitive behaviors. 

For instance, I met all my developmental milestones till 1.5 years, including the ability to able to speak short phrases. I was the happy social butterfly at my first birthday party; I interacted with everyone at the party. I pointed to the distant bird sitting on a tree and engaged in joint attention activities. 

But after my regression at 16-18 months, I lost a majority of the previous skills. By age 2, I lost the ability to talk, the ability to make eye contact, the ability to point, the ability to do a pincer grasp and the ability to hold a spoon. I no longer recognized even my parents. I hid under the table, walked on tiptoe, endlessly spun the wheels on my tricycle and lined up every toy in the house. I was in a confused and dazed state and cried most of the time in daycare. I fussed for eating and sleeping. 

This week, we had studied Alzheimers in my Cell Neuroscience class. In addition to understanding brain function, we had also watched videos of lived experiences. For the folks with Alzheimer's its like their world associations just fade away, they no longer recognize even family members in addition to loss of functioning skills and even language. Ergo, there is a massive regression. There is now a desperate search for research into solutions to reverse this process.

DEJA VU!! - Regressive Autism is like Alzheimers in toddlerhood itself where you forget even your family, instead of in old age. Something must have happened to cause this memory loss and this functioning loss. I can understand why parents of young children find this heartbreaking; they suddenly become strangers for own children. 

Why is there not equal importance given to find causes and ways to stop this massive slide seen in regressive autism during toddlerhood, why is loss of skills only seen as a problem if it happens in adulthood?

Asset-Framing

Is this applicable to Autism. YES!!

"Asset-Framing" is a cognitive framework developed by Trabian Shorters.

According to Shorters, Asset-Framing involves three key elements:

1. Shifting the focus from problems to solutions: Instead of focusing on what's wrong or broken, Asset-Framing encourages individuals/communities to focus on their strengths and assets and how they can use them to address their challenges.
2. Highlighting the value of lived experiences: Asset-Framing recognizes that individuals and communities have unique lived experiences that shape their perspectives and abilities. By valuing and leveraging these experiences, people can better understand their strengths and use them to achieve their goals.
3. Emphasizing the power of community: Asset-Framing acknowledges that individuals are interconnected and that their strengths are often amplified when they work together in supportive communities.

Essentially. Asset-Framing is a positive and empowering way of thinking about individuals and communities that can help to promote resilience, self-determination, and collective action.