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.

The Autism - Parkinson's Connection

Research has found some evidence of a potential link between autism and Parkinson and that autistics are at higher risk for PD as they age. 

No surprise really as many autistics (like me) already have many movement-disorder-like movements, which really impacts our everyday functioning and which currently gets lost in the world of Autism dx overshadowing where everything is attributed to "autism" so nothing more need be done. 

Urgent need for research and translatable solutions

Taxonomy of Sensory Differences in Autism

 

The authors (Vanderbilt study) propose a hierarchical taxonomy to describe and refer to various sensory features of autism, which will help researchers to better understand the nature and impact of the sensory differences of autism and place future research targets at appropriate levels of analysis.

The 5 levels of proposed taxonomy are.

 

Imbecile

A history lesson in degrading terminology around disability. 

The term "imbecile" has historically been used as a diagnostic label for neurodevelopmental disabilities like autism. 

Origins: The term coined in the 18th century by French physician Philippe Pinel, who used the term to describe individuals who were intellectually disabled but still able to function in society with some support. However, over time the term came to be used more broadly to describe individuals with a range of intellectual disabilities, including those who were severely impaired and unable to function independently.

Justify Eugenics: The term was widely used in the US and Europe during the 19th and early 20th centuries and was used as part of a broader eugenic movement that sought to control and eliminate disabled people from the population. The use of terms like "imbecile" and "moron" were used to classify individuals based on their perceived level of intelligence, and were used to justify forced sterilization, institutionalization, and other forms of discrimination.

One of the most well-known cases involving the use of the term "imbecile" was the Supreme Court case Buck v. Bell, in which the court upheld the constitutionality of forced sterilization for individuals classified as "imbeciles." The decision paved the way for similar laws in other states, and resulted in the sterilization of tens of thousands of individuals with disabilities.

Buck v. Bell (1927): This case involved the forced sterilization of a woman who was deemed "feeble-minded" by the state of Virginia. In its decision, the Supreme Court upheld the constitutionality of Virginia's sterilization law and stated that "three generations of imbeciles are enough." (274 U.S. 200)

Mandated Removal in 1970s: The term "imbecile" fell out of use in the early to mid-twentieth century as medical and psychological professionals began to adopt more standardized and scientific classifications for intellectual disabilities. However, the use of the term persisted in some legal and bureaucratic contexts until the 1970s, when the Rehabilitation Act of 1973 mandated the removal of discriminatory language from federal laws and policies related to individuals with disabilities. 

Today, the use of terms like "imbecile" is generally considered outdated and offensive.

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Plain Language Version 

The History of Hurtful Words About Disability

The word "imbecile" used to be a medical term for people with intellectual disabilities, like autism.

Origins

• In the 18th century, a French doctor named Philippe Pinel used "imbecile" to describe people who had some intellectual disabilities but could still function in society with help.
• Over time, the term was used more broadly to describe people with all levels of intellectual disabilities, even those who couldn’t live independently.

Eugenics Justification

• In the 19th and early 20th centuries, the term "imbecile" was widely used in the US and Europe.
• It was part of the eugenics movement, which aimed to control and eliminate disabled people from the population.
• Words like "imbecile" and "moron" were used to label people based on their perceived intelligence.
• These labels were used to justify forced sterilizations (preventing people from having children), putting people in institutions, and other forms of discrimination.

Buck v. Bell Case

• One famous case was Buck v. Bell in 1927.
• The Supreme Court allowed the forced sterilization of a woman called "feeble-minded" by the state of Virginia.
• The court said, "three generations of imbeciles are enough," leading to many more forced sterilizations across the country.

Changes in the 20th Century

• In the early to mid-1900s, medical and psychological professionals began using more scientific and respectful terms for intellectual disabilities.
• However, the term "imbecile" was still used in some legal documents until the 1970s.
• The Rehabilitation Act of 1973 required the removal of discriminatory language from federal laws and policies about people with disabilities.

Today

• Today, using words like "imbecile" is considered outdated and offensive.
• It’s important to use respectful and accurate language when talking about people with disabilities.

Founders Rock

This day in 1860. 

Go Bears!!