The 5 levels of proposed taxonomy are.
Taxonomy of Sensory Differences in Autism
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.
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.
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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.
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April 15 is Middle-Aged Autistics Day
The growing number of young adult autistics of today will soon join the ranks of becoming Middle Aged Autistics of tomorrow.
There is limited research on issues specifically related to middle-aged autistics, as most studies tend to focus on children and adolescents with autism.
Acknowledging the need for knowledge of what happens in this phase, along with the services and supports that will be needed.
Upstander
In silence, the Bystander stays
As others suffer in myriad ways
Courage blooms in an Upstander's heart
To speak up, To act, To play their part
A Bystander may see, but an Upstander acts with compassion & courage, making a difference in the world
- @HariSri108
Poem and quote inspired by this twitter post by GGSC on bystander effect
OpEd Project
Got selected as a Public Vocies Fellow. Thank you PD Soros and OpEd Project for this amazing opportunity, I'm excited to learn from and and be mentored by some of the brightest minds in writing. I'm looking forward to learning how to contribute to important conversations in our world.
Peripersonal Space
Peripersonal space (PPS) is the region of space immediately surrounding the body, where sensory inputs from multiple modalities are integrated to guide actions and protect the body. In autism, alterations in PPS processing may contribute to challenges in sensory-motor integration, social interactions and spatial navigation. This area of research, which I am exploring in graduate school, holds promise for interventions at the individual level and disability accommodations at the societal level. Stay tuned for more in-depth posts on this topic.
PlainSpeak: Peripersonal space (PPS) is the space right around our bodies that helps us sense and respond to things nearby. For autistic individuals, differences in how this space is processed might explain some of the sensory and social challenges they face and how we navigate the space around us. I'm studying this in grad school and will be sharing more insights in upcoming posts.
Related Posts on [PPS] [Peripersonal Space]
The Autism Alzheimers Connection.
Alzeheimers and Oxidative Stress was the topic of study at my cell neuroscience course.
Increasingly research is showing a link between Autism and Alzheimer's though they had been considered distinct neurological disorders in the past.
The point
This is a serious area of concern that needs to be looked at even more closely as the ever increasing numbers of autistic children (currently at 1:36) will soon join the ranks aging autistic seniors.
Happy Tamil New Year
Puthandu /Tamil New Year is believed to be the day God Brahma, began his creation. It falls on the first day of the Tamil month of Chithirai (~Apr 13-15). Tamil calendar was created during the Chola dynasty in the 9th century CE.
Mango Pachadi, is the speciality food of the day, symbolizing the different flavors of life, including sweetness, sourness, bitterness, and tanginess.
Schwartzman 2023: suicidal behaviors in autistic adolescents
No surprise that suicide ideation and NSSI is higher in autistics!
Key Takeaways
- Early adolescent autistics (total sample 239, 138 autistic) at higher risk for suicidal ideation and NSSI (non suicidal self-injurious behaviors) compared to non-autistics.
- 20% autistics reported suicide ideation on self-report questionnaires but not to a study psychiatrist (via the Columbia Suicide Severity Rating Scale)
- No sex based differences seen.
Questions that arise after reading.
- What are the underlying factors that contribute to the higher risk of suicidal thoughts / behaviors and NSSI in autistic early adolescents?
- How can clinicians improve their ability to detect these behaviors given the discrepancies between self-report and clinician-rated measures?
- What interventions or treatments are effective in reducing the risk of these behaviors in autistic youth?
- How can parents, caregivers, and educators better support autistic youth who may be at risk ?
- What are the long-term outcomes for autistic youth with suicidal thoughts/behaviors and NSSI?
Schwartzman JM, Muscatello R, Corbett BA. Assessing Suicidal Thoughts and Behaviors and Nonsuicidal Self-Injury in Autistic and Non-Autistic Early Adolescents Using the Columbia Suicide Severity Rating Scale. Journal of Autism and Developmental Disorders 53.2 (2023): 559-570. doi:10.1177/136236132311621. PMID 30938385
April 13 is Autism Adolescence Day
Recognizing the transitions that come with adolescence in autism, along with the current inadequacy of needed supports, care and services. Translatable solutions are needed now.
April 13 is Autism Adolescence Day
Because being a teenager isn't hard enough already
Compared to Neurotypical Teens, Autistic teens face greater challenges in
Social Front.
- Social Isolation/Loneliness, Social Difficulties, fewer friendships/social contacts, lesser time spent on social activities (1,2,3)
- Mental health, suicide ideation and NSSI
- Bullying and victimization
- Navigating educational system & workplace due to social and communication difficulties
Health Issues.
- Seizure onset 15% (compared to 0.5 - 1% in general population) (4).
- Higher prevalence of atypical or non-convulsive seizures in autistic teens compared to non-autistic (5).
- Increased prevalence of epilepsy in autistic teens (11.4%) compared to 0.5% in general population (6).
- Sleep disturbance at 50-80%- insomnia, nightmares, and irregular sleep-wake cycles (7).
- Sensory sensitivities at 88% (non-autistic teens 58%) (8).
- GI symptoms in autistic kids compared to non-autistic kids. In a 2014 study (9) figures are 43.5% compared to 18.1%. In a 2010 study (10), figures are 46-85% compared to 9-10%). Which means the prevalence is higher in autistic teens as well. 'Autistic teenagers at increased risk for anxiety, depression, and other mental health conditions.
- Co-occuring condition in 70% of autistics - anxiety disorders 41%, ADHD 31% & mood disorders 16% (11).
- Nuero-inflammatory markers in autistic teens
- Obesity 22.4% (general population 15.6%) (14)
- Asthma 22.2% (general population 12.8%) (15)
- Allergies 23.9% (general population 18.4%) (16)
MAST - The Maastricht Acute Stress Test
[concepts in Sensorimotor Research]
The Maastricht Acute Stress Test (MAST) is a research laboratory procedure that is used to induce stress in research participants. It is used to study the effects of stress on a variety of physiological and psychological processes, including heart rate, blood pressure, cortisol levels, anxiety, and depression. The MAST combines elements from two of the most common experimental paradigms measuring stress, the Trier Social Stress Test (TSST) and the Cold Pressor Test (CPT).
The Test:
There is a 5-minute preparation phase, during which the participant is seated in a comfortable chair and is given instructions about the task. The participant is then asked to put their right hand into a bowl of ice water for 60-90 seconds. In between each hand immersion trial, the participant is asked to complete a series of mental arithmetic problems. The participant is given negative feedback if they make a mistake or take too long to answer a question.
The test takes approximately 20 minutes to complete. During the procedure, the participant's heart rate, BP, and salivary cortisol levels are measured. The participant is also asked to rate their subjective feelings of stress on a scale of 1 to 10.
Benefits
- It is a simple and easy-to-use procedure.
- It is non-invasive and does not pose any risk to participants.
- It is effective at inducing stress in participants.
- It can be used to measure a variety of stress-related outcomes.
Limitations
- Laboratory-based procedures may not be representative of real-world stress.
- It can be stressful for participants and may not be suitable for everyone. (will autistics even agree to do this?)
- It is not a diagnostic tool and cannot be used to diagnose any medical conditions.
HEW sit-in continues - Disabled vow long fight
Daily Cal Headlines ... April 11, 1977:
"HEW sit-in continues - Disabled vow long fight."
from Day 6 of the nearly month-long sit-in.
highlights:
CeCe Weeks said: "It's the first militant thing we've ever done. There is a new political movement throughout the land. We're going to stay till we're dragged out."
Although HEW Secretary Califano said he would sign the revised regulations, Kitty Conetalks about how those are inadequate and called upon President Carter to sign the original regs immediately as he had promised he would do.
State Director of the Department Of Rehabilitation Ed Roberts (former CIL Director) said "We've got to keep up the pressure."
Demonstrators Mary Jane Owen and then-CIL Deputy Director Judith Heumann had gone on a hunger strike.
Donations were pouring in from "such politically dissimilar groups as the Black Panthers and Safeway stores, McDonald's and the United Farm Workers. 'We couldn't do this without the support from outside," Cone said. 'We're really excited by the community's response.'"
"We're basically happy and strong," Weeks said. "There's more energy here all the time," she said.
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That was indeed a time. The attached photo is a scan from a book of about 100 Daily Cal front pages: "The Daily Californian's Best of Berkeley 1960-1980, publ by the Independent Berkeley Student Publishing Company, 1980.
—
Daily Cal photo caption:
“The nearly 100 protesting disabled staged a sit-in [to demand the passage of the long-delayed Regulations implementing section 504 of the 1973 Rehabilitation Act] at San Francisco’s HEW Office.”
Section 504, the first disability civil rights act, Required nondiscrimination of people with disabilities by end of the end by any entity receiving federal funds.
These Regulations became the model for the Americans with Disabilities Act 13 years later, which prohibited discrimination against people with disabilities in virtually all areas of public life.
highlights:
CeCe Weeks said: "It's the first militant thing we've ever done. There is a new political movement throughout the land. We're going to stay till we're dragged out."
Although HEW Secretary Califano said he would sign the revised regulations, Kitty Conetalks about how those are inadequate and called upon President Carter to sign the original regs immediately as he had promised he would do.
State Director of the Department Of Rehabilitation Ed Roberts (former CIL Director) said "We've got to keep up the pressure."
Demonstrators Mary Jane Owen and then-CIL Deputy Director Judith Heumann had gone on a hunger strike.
Donations were pouring in from "such politically dissimilar groups as the Black Panthers and Safeway stores, McDonald's and the United Farm Workers. 'We couldn't do this without the support from outside," Cone said. 'We're really excited by the community's response.'"
"We're basically happy and strong," Weeks said. "There's more energy here all the time," she said.
------
That was indeed a time. The attached photo is a scan from a book of about 100 Daily Cal front pages: "The Daily Californian's Best of Berkeley 1960-1980, publ by the Independent Berkeley Student Publishing Company, 1980.
—
Daily Cal photo caption:
“The nearly 100 protesting disabled staged a sit-in [to demand the passage of the long-delayed Regulations implementing section 504 of the 1973 Rehabilitation Act] at San Francisco’s HEW Office.”
Section 504, the first disability civil rights act, Required nondiscrimination of people with disabilities by end of the end by any entity receiving federal funds.
These Regulations became the model for the Americans with Disabilities Act 13 years later, which prohibited discrimination against people with disabilities in virtually all areas of public life.
Media Mention
Media Mention On twitter.
Thank you for the kind words.
I hope I do indeed get to "redefine" autism research
No Eye Contact. No problem.
No Eye Contact?
No Problem!
Sunglasses are your personal Eye Contact Filter.
#AutismHumor #AutismSolutions
McGlade et al 2023: Effectiveness of Early Intervention Therapies
My take: If early childhood therapy was so "effective", then the thousands of kids who have had massive amounts of therapy all through childhood (starting with early intervention) would have "RECOVERED" may times over. Why are my challenges still significant - ie: all that therapy did not make a dent. Currently there is no such thing as gold-standard childhood therapy. Most autism therapy is hit-or-miss, at any age. Its just $$$$ spent on trial and error. Lots of careers and promotions.
Recently there was a twitter post pointing out that since were were no readily available "statistics" (referring to it as a "cool autism fact") showing numbers of the more significantly impacted adult autistics meant that numbers of this group must be overstated. Others in the thread questioned if adult autistics who did not not speak, even existed, since that autistic posting had learned to speak at age 3. This an irresponsible statement and an erasure of the huge number of non-speaking or minimal verbal adults who need to be part of the autism solutions.
Onto the paper.
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- Limited evidence to recommend very early interventions for infants and toddlers with autism.
- Limited impact of early intervention for at-risk infants/toddlers (by age 3.
- No significant treatment effects for autism symptoms, cognitive outcomes, receptive/expressive language. Even neurocognitive outcomes (EEG and eye tracking) were inconsistent.
- Gold-standard early intervention is yet to be developed. Future treatment will need to include novel and individualized intervention targets alongside the targeting of parental responsiveness.
Questions that arise.
- What are the implications of these findings for clinical practice and policy related to early intervention for autism?
- What are the long-term outcomes of very early interventions for infants and toddlers with autism beyond age 3 years?
- What are the ethical considerations related to intervening in infants and toddlers at increased likelihood of autism dx, and how can these be addressed in future research and practice?
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