Nothing about us, without us.

The phrase "Nothing about us without us" (NAUWU) gained prominence in the 1980s as disability rights movement began to gain momentum and assert the rights of disabled individuals. It resonated with the broader social justice movements that advocated for marginalized communities to have control over their own destinies and be actively involved in decision-making processes.

NAUWU represents a powerful demand for inclusivity, equal participation, and the recognition of disabled individuals as the experts of their own lives. It encapsulates the ongoing struggle for disability rights and the importance of centering the voices and experiences of disabled people in all matters that concern them.

NAUWU  is grounded in the principle of self-advocacy and the belief that the disabled should have a voice and agency in shaping policies, laws, and programs that directly impact them. It emphasizes the importance of including the perspectives and experiences of disabled individuals in all aspects of disability-related discussions, rather than making decisions on their behalf without their input or representation.

Origins of the phrase NAUWU: 

My friend and fellow autistic Rebecca Eli-Long states "I've been told that it entered US disability rights spaces via South African activists. At least that's what's reported in James Charlton's book, Nothing About Us Without US"

While it is challenging to attribute the phrase to a specific individual, it has been embraced and popularized by disability rights activists, organizations, and scholars worldwide. 

The slogan has become a rallying cry for disability rights advocates, reinforcing the core principle of empowerment, self-determination, and the right to be heard and respected.

One notable event associated with the early use of the phrase is the International Year of Disabled Persons, which was proclaimed by the United Nations in 1981. This declaration helped to bring global attention to disability rights and led to increased advocacy efforts by disabled individuals and organizations.

Context of Autism Research 

Recent years have seen some movement in discussion groups led by university and private research labs to hear inputs from all stakeholders, which includes autistics, family members, professionals (therapists, medical professionals, caretakers etc), with a long term view that such participatory research will lead to meaningful research and meaningful solutions. 

The good part is that finally there is some acknowledgement of the principle of NAUWU. 

Good beginning, but only the beginning. Let's not celebrate just yet. There are still miles to go. 

Why? Because the idea of "Nothing About Us Without Us" is 40 years old (in the 1980s) and it has taken all the way till the 2020's to see movement towards even acknowledging our voices.

Is it going to take another 40 years to see the next step of our voices translating into research and actual translatable solutions on the ground (instead of sitting as academic theory).

And will those solutions address everyone's needs or continue to focus on a narrow band of autistics, which means the rest of us continue to slip through those cracks and get left behind. 

What is the timeline? Is it even going to happen in my life time? 

 

Honestly in the the 2.5 decades I've been around, I have not seen much in terms of translatable autism solutions. We are still being peddled therapies and theories that work for a narrow band, but applied to all.

After all, there is a  ton of profits, fame and power for select groups in the autism space, so there is competition to becoming the loudest voice and the sole authoritative voice in the autism space, even if it means demeaning others. 

The irony being no one is an autism expert, as no one knows still enough about autism to be an expert. 

There is the occasional token nod to NAUWU to brush that argument out of the way. 

The result is not just the lack of solutions but continued exclusion and a poor quality of life and access to opportunities for the remaining autistics. To the add to the confusion, the autism community seems to be divided into  polarized camps and folks like me who desperately need translatable solutions are not getting them. 

Finding the actual cause

 https://www.washingtonpost.com/wellness/2023/06/01/schizophrenia-autoimmune-lupus-psychiatry/

YES. I believe there are parallels for autism. There is probably some other physiological stuff going on that is causing all the SIB, meltdown and even struggles with talking ability which fluctuate on a day to day basis - all stuff which what makes or breaks your inclusion in society and gatekeeps opportunities. I bet after a few decades when I am a very old man, i will find out that what I had was some INFLAMMATORY PROCESS that and treatable as a baby itself and I could have had a better quality of life instead of struggles, exclusion and rejections at every step. 

New research suggests that a subset of patients with psychiatric conditions such as schizophrenia may actually have autoimmune disease that attacks the brain

Markx and his colleagues discovered that although April’s illness was clinically indistinguishable from schizophrenia, she also had lupus, an underlying and treatable autoimmune condition that was attacking her brain.

... a complex autoimmune disorder where the immune system turns on its own body, producing many antibodies that attack the skin, joints, kidneys or other organs. But April’s symptoms weren’t typical, and there were no obvious external signs of the disease; the lupus appeared to only be affecting her brain.

After months of targeted treatments — and more than two decades trapped in her mind — April woke up.

ERGO: underlying autoimmune and inflammatory processes may be more common in patients with a variety of psychiatric syndromes than previously believed.

undergone many courses of treatment — antipsychotics, mood stabilizers and electroconvulsive therapy — all to no avail.

 

The beauty of creativity lies in its infinite possibilities

Towards a more Humane Society. Contemplation one line a day. #MentalHealth.

 

WASI-II Wechsler Abbreviated Scale of Intelligence

The WASI-II (Wechsler Abbreviated Scale of Intelligence) is an IQ test for ages 6-90.  It is a shorter and simpler measure based on the more comprehensive Wechsler Intelligence Scale for Children (WISC) and the Wechsler Adult Intelligence Scale (WAIS). 

WASI-II measures cognitive abilities across a range of domains and provides an estimate of a person's general intellectual ability (or Full Scale IQ - FSIQ). It is often used in research studies, and often used to screen for intellectual disability or giftedness, or to assess cognitive abilities in the context of neuropsychological evaluations or clinical diagnoses.

Uses in autistic population

• Assessment of Cognitive Abilities: believed to help identify cognitive strengths and weaknesses in verbal comprehension and perceptual reasoning, which can be informative for planning educational/ behavioral interventions.
• Research: frequently used in autism research studies as measure of cognitive ability.
• Diagnosis: While the WASI-II itself isn't a dx tool for autism, it can be part of a broader diagnostic assessment as it is believed that understanding an individual's cognitive functioning can perhaps provide context for other symptoms or behaviors.

Equanimity is the trust that life will unfold as it should

Towards a more humane society. #MentalHealth. Contemplation, one line a day.

 

Creativity is the fuel that ignites innovation

 Contemplation one line a day. #MentalHealth.

 

Keyless Musings

In musings deep, my mind does roam

Engulfed in thoughts like a garden gnome
Ideas pirouette meandering free

In this atypical brain of me

But, oh no, in this mental spree
forget where I left my keys!

Four Deer

A nice sight to wake upto early morning. Four deer camped, sitting/napping, in backyard.

Early morning, I see four deer

Sitting there, without fear

So calm and serene

Tall lush trees, their screen

Lovely sight to behold

Moment of beauty, untold

Linear and Non Linear Thinking

Linear and non-linear thinking represent distinct cognitive styles for processing information and solving problems.

Linear Thinking is characterized by a sequential, logical approach. It involves following a step-by-step progression to reach conclusions or solve problems. Linear thinkers focus on cause-and-effect relationships, rely on logical reasoning, and use a structured, organized method. This approach is effective for tasks requiring logical analysis, systematic breakdown of problems, and adherence to specific processes.

Non-Linear Thinking is defined by a holistic, divergent approach. Non-linear thinkers make connections between seemingly unrelated ideas, engage in creative, out-of-the-box thinking, and see patterns others might miss. They generate multiple solutions to problems and think in an intuitive, associative, or visual manner. This cognitive style excels in creative problem-solving, pattern recognition, and generating innovative ideas.

Both have strengths. Linear thinking is often effective for tasks that require logical analysis, step-by-step reasoning, or adherence to a specific process. Non-linear thinking, can be valuable in creative problem-solving, pattern recognition, generating innovative ideas, or seeing the bigger picture.

Autistics are known to exhibit a wide range of thinking styles, and some may excel in non-linear thinking processes. Our ability to make connections, see patterns, or approach problems from unconventional perspectives can be a unique strength.

However, traditional IQ tests often emphasize linear thinking and may not fully capture or assess the strengths of non-linear thinking in the autistic population.

Recognizing and valuing both cognitive styles can provide a more comprehensive understanding of cognitive abilities in autism.

Linear v Non Linear Neuroscience Version, Plain Language Version

Compassion is the golden rule of life that guides us to treat others as we would like to be treated

 

Towards a more Humane Society. Contemplating an emotion, 1 line a day. Our divided and conflicted world needs compassion more than ever.  #MentalHealth. 

Compassion is the golden rule of life that guides us to treat others as we would like to be treated

Fluid v Crystallized Intelligence

Fluid intelligence and crystallized intelligence are two distinct aspects of cognitive abilities, as proposed by psychologist Raymond Cattell. Research suggests that autistics may exhibit strengths in fluid intelligence while crystallized intelligence may vary depending on individual experiences and access to education. However,  it is to be noted that traditional distinction between fluid and crystallized intelligence may not fully capture the complexity of cognitive abilities in autistics as their cognitive profiles often encompass a wide range of skills, strengths, and challenges that extend beyond these categories. 

Compassion is the anchor that keeps us grounded in the face of adversity

Towards a more Humane Society. Contemplating an emotion, 1 line a day. 

Our divided and conflicted world needs compassion more than ever.  #MentalHealth. 

Mental Age

The concept of "mental age" in assessments has been subject to criticism and limitations. Here are some reasons why

• Normative Bias: Mental age is based on comparing an individual's performance to the average performance of a specific age group. However, these age norms may not adequately account for cultural, linguistic, or socioeconomic differences. The concept assumes that all individuals progress at the same rate, which may not be true or fair across diverse populations.
• Arbitrary Cutoffs: Mental age relies on the notion of discrete age categories, which can lead to arbitrary cutoffs and potential misclassifications. Development is a continuous process, and individuals may display a range of abilities that do not neatly align with specific age groups.
• Lack of Sensitivity: The concept of mental age does not capture the full complexity and multidimensionality of human intelligence. It may oversimplify and overlook individual strengths, weaknesses, and variations in cognitive abilities across different domains.
• Limited Predictive Value: Mental age alone may not provide sufficient information about an individual's future development or functional outcomes. It does not account for the dynamic nature of cognitive abilities and the potential for growth and change over time.
• Reinforcement of Deficit-Based Approaches: The focus on mental age as a deficit-oriented measure may perpetuate stigmatization and negatively impact individuals' self-perception and opportunities for growth.

It is essential to approach assessments and diagnostic criteria with a comprehensive and nuanced perspective, considering multiple factors beyond a single measure like mental age to ensure a holistic understanding of an individual's abilities and needs.

Adult Autism RSS Feed

For what its worth, came across this. This blog is #2 in a top Autism RSS feed list.  

EOWPVT - Expressive One-Word Picture Vocabulary Test

Lexicon [Measures] - EOWPVT 

The EOWPVT (Expressive One-Word Picture Vocabulary Test) is an assessment tool used to measure expressive vocabulary skills in individuals (ages 2.5 years - 90 years). It requires the examinee to identify and name pictures presented to them. It is commonly used in educational, clinical, and research settings to assess language development and vocabulary skills including in the autistic population.

The sub-measures of the EOWPVT include a basal level and a ceiling level, which determine the starting and stopping points of the assessment based on the individual's performance. The test presents a series of pictured items, and the examinee is asked to name each picture.

Scoring and interpretation of the EOWPVT involve calculating raw scores, standard scores, and percentile ranks. These scores provide an indication of the individual's expressive vocabulary skills compared to their peers.

Limitations re Autism

• Limited assessment of other language domains: Thought it focuses on expressive vocabulary skills, it does not comprehensively evaluate other language domains such as grammar, syntax, or pragmatics.
• Limited cultural and linguistic representation: The picture stimuli used may not be culturally or linguistically appropriate for all individuals, potentially impacting their performance and scores.
• Lack of context and functional language use: The test assesses isolated one-word responses and does not capture the individual's ability to use language in context or in functional communication situations.
• Potential reliance on rote memorization: Some autistics may excel at memorizing labels for pictures without fully grasping the meaning or generalizing the vocabulary to other contexts

Compassion is the song that sings in our hearts when we reach out to help others

Towards a more Humane Society. Contemplating an emotion, 1 line a day. 

Our divided and conflicted world needs compassion more than ever.  #MentalHealth. 

 

Media Mention

Thank you for the kind words. 

IQ Testing

IQ is a measure designed to assess an individual's cognitive abilities and intellectual functioning; specifically it aims to assess various aspects of intelligence, including verbal comprehension, perceptual reasoning, working memory, processing speed, and problem-solving abilities. These tests typically cover domains such as language, math, spatial reasoning, and logical thinking.

IQ scores are derived by comparing an individual's performance on the test to a representative sample of the population. The scores are standardized and follow a bell curve distribution, with the average score set at 100. Scores above 100 indicate above-average intelligence, while scores below 100 indicate below-average intelligence. The standard deviation is typically 15 points, meaning that about 68% of the population falls within the range of 85-115.

Commonly used IQ tests in Autism 

• WAIS: Wechsler Adult Intelligence Scale (ages 16-90)
• WISC-V: Wechsler Intelligence Scale for Children (ages 6-16)
• KABC-II: Kaufman Assessment Battery for Children (ages 3-18)
• MSEL: The Mullen Scales of Early Learning (ages birth - 5)
• DAS: The Differential Ability Scales (ages 2-17)
• Leiter-R (ages 2-20+)
• RIAS (ages 3-94)
• CAS Cognitive Assessment System (ages 5-17)

See Post: Why is IQ Testing especially problematic in the Autistic Population

Other general problems and limitations of IQ Testing:

• Narrow Assessment: IQ tests primarily measure cognitive abilities related to academic success and may not capture the full range of human intelligence, such as creativity, emotional intelligence, or practical skills.
• Cultural Bias: IQ tests have been criticized for potential cultural bias, as they may reflect the experiences, values, and knowledge of specific cultural or socioeconomic groups. Some questions or tasks may be more familiar or relevant to individuals from certain backgrounds, leading to potential disparities in scores.
• Limited Contextualization: IQ tests provide a snapshot of an individual's abilities at a specific point in time and may not account for the influence of environmental or socio-economic factors, educational opportunities, or individual motivation on test performance.
• Interpretation Challenges: IQ scores are often misinterpreted or used as a sole indicator of an individual's worth or potential, neglecting the complexity of human intelligence and the importance of other factors such as motivation, personality traits, or social and emotional skills.

History: The concept of IQ testing dates back to the early 20th century. Alfred Binet and Theodore Simon developed the first modern intelligence test in 1905. Over time, numerous IQ tests have been developed, revised, and standardized. 

Why IQ Testing is Problematic in Autistics

 

Some reasons why  IQ Testing is Problematic in Autistics.[What is IQ Testing]

• Communication, Language and Social Challenges: Many IQ tests heavily rely on verbal and social interaction (including comprehension, vocabulary, & verbal reasoning), which can be challenging for autistics who may experience difficulties with language, communication, (eg: difficulties with expressive and receptive language, pragmatics, and understanding abstract or ambiguous language) and social skills. This can lead to misinterpretations of their abilities.