Looking at the Self

In the context of disability and autism, all the terms discussed below takes on a unique significance as individuals may grapple with challenges that affect their physical, cognitive, emotional, and social attributes. Understanding one's own abilities, limitations, and unique traits can be an integral part of developing a positive self-perception and fostering self-acceptance and empowerment within the disability and autism communities.

Self-Perception: refers to how we perceive themselves, including our physical, cognitive, emotional, and social attributes. It involves forming an understanding of one's own characteristics, abilities, and behaviors. Self-perception can encompass both internal aspects, such as thoughts and emotions, and external aspects, such as appearance and social roles. It involves recognizing oneself as a distinct entity separate from others and the environment.

Self-Reflection: involves the process of introspection and examining one's thoughts, feelings, and experiences. It entails looking inwardly and exploring one's own inner world. Self-reflection allows individuals to gain insight into their beliefs, values, motivations, and behaviors. It often involves asking oneself questions, considering personal experiences, and analyzing one's own actions and their consequences. Self-reflection facilitates self-understanding, personal growth, and the ability to learn from past experiences.

Self-Evaluation: refers to the process of assessing one's own abilities, performance, and worth. It involves comparing oneself to internal or external standards and making judgments about one's strengths, weaknesses, and accomplishments. Self-evaluation can be influenced by various factors, including personal goals, social comparisons, and feedback from others. It plays a crucial role in shaping self-esteem, as positive self-evaluation can enhance feelings of self-worth and competence, while negative self-evaluation can lead to self-doubt and low self-esteem.

Self-Awareness: is the conscious knowledge and recognition of one's own existence, thoughts, feelings, and sensations. It involves being cognitively and emotionally attuned to oneself. Self-awareness allows individuals to monitor and reflect upon their own internal states, behaviors, and reactions in relation to themselves and their environment. It involves recognizing one's own strengths, weaknesses, values, and beliefs. Self-awareness is a fundamental aspect of self-consciousness and is essential for introspection, self-regulation, and social interactions.

Ed Levels and dx age

 I came across an intriguing fact today. 

Individuals who get an ADHD diagnosis in childhood tend to attain lower levels of education than individuals who get an ADHD in adulthood (Wymbs & Dawson-2015).

I wonder if there is a parallel in autism too. Do autistics who get dx in childhood have lower ed levels than autistics who get dx in adulthood. (though I could not see much research on this)

I would think so - cuz despite the claim that you get better access to childhood autism therapy (most of which does not work by the way), you also end up facing a lot of gatekeeping from an educational system that fundamentally starts off with a view of lower exceptions of anyone with a disability dx, which means you are often kept out of mainstream education, gatekeeped out of opportunities than those without a dx would have access to if they chose to pursue it. We are not even given that option of opportunities as everything and everyone around you indicates over and over that you are incapable of more than just surviving and being pushed up and out of the school system (parallels to the school-prison pipeline in minority communities). 

All this constant stigma and discrimination takes a toll on mental health, self-esteem, and motivation. If the ed foundational legs at the basic school level is non-supportive and discouraging, there is no motivation to complete and attempt yet another potentially demotivating/discouraging environment. 

Ironically I find that though it's a lot more work/effort (the disability part), ed is actually much more non-judgmental and freeing at college level compared to school, but you have to first navigate the school system; a step many may not be able to cross, to even make it to college.

If you know everything, you are not learning

 Something Professor Carissa Cascio shared with the lab today. So appropriate. 

Also accompanied by a message encouraging us to "be confident in asking questions and not worried about what they don't know. If you already know everything, you're not learning!"

Thank you for this assurance cuz my rather atypical educational path leaves me wondering (more often than not) if there are things I have missed out (through the typical NT education path,  NT social experiences/interactions/networking) which is now maybe impacting my knowledge and work. 

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. 

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.

Autistic Inertia

[Concepts in Sensorimotor Research]

Newton's Law of Inertia

The general law of inertia, also known as Newton's first law of motion, states that an object at rest will remain at rest, and an object in motion will continue moving in a straight line with a constant velocity, unless acted upon by an external force. This means that an object will maintain its state of motion (either at rest or in motion) unless some force is applied to change it.

Autistic Inertia

In Autistic inertia we draw on those parallels to describe the difficulty that some autistics experience in starting tasks and stopping tasks, whether it with reference to their behavior, thinking or attention to task. 

• An object at rest will stay at rest: This is the difficulty in starting tasks.like you are almost freezing and you need some external kickstart to achieve takeoff velocity to get that motion/task going.  Some of this could be due to catatonia [post on catatonia].
• An object in motion will stay in motion: The is difficulty with stopping tasks. Once you get moving, - its difficult to end whatever you are doing, so end up in this OCD loop of repeated  unproductive thoughts or action (some forms of stims are OCD too).
• other examples include difficulty with
• Transitioning between tasks, 
• Adjusting body movements and thoughts to suit a new and rapidly changing environment 
• Staying on task, maintaining attention 
• Transitioning between paying attention/focus mode to non-attention mode which is also needed at times. 
• Making decisions, planning, following through
• Anxiety, Depression

Part of your mind is aware you need to be doing starting/stopping/transitioning/planning but you are unable to initiate that action and remain stuck. All of this difficulty in initiating and stopping actions is mentally and physically exhausting as your body feels at war with itself.  It takes up more spoons [post on Spoon Theory] and  can contribute to autistic burnout [post on autistic burnout]. 

Causes

Autistic inertia can be caused by a number of factors, including sensory overload, motor-apraxia, movement-issues, body-coordination issues, executive dysfunction, and anxiety. 

Autistic inertia can make it difficult to complete tasks, meet deadlines, and maintain a job or school schedule. It can lead to autistic burnout [post on autistic burnout]

The flip side is that this inertia can also help with hyper-focus which is an advantage in terms of learning a specific area. 

Misconceptions

• Autistic inertia is often misunderstood as laziness, non-compliance, task avoidance, lack of effort or due to lack of motivation. 
• Many of these concepts in autism and neurodiversity are often though to apply to only those who have low/no support-needs. Spoken communication ability is not linked to inertia. In fact inertia may be even more complex in autistics who have movement-disorder-like-issues, apraxia, sensory dysregulation and body coordination challenges.

What can we do to help

• Put external assistances in place where possible to ease transitions. Whether its a reminder from others or something that you can put into place on your watch or calendar depending on context. And the amount and intensity of assistance varies from individual to individual. 

Related Terms: A Chara ,    Allistic,    Aspie,    Atypical,  Autistic Burnout,  Autistic Inertia,  Catatonia,   Crip Time,   Critical Disability Studies,   Disability Justice Movement,  Disability Rights Movement,   Disability Eugenics,   Feeble-Minded,   Imbecile,   Inspiration Porn,  Masking/Camoflauging,   Microaggressions,   Neurominority,   Ofa Ahi Latu,   R-Word,   Savant,   Spoon Theory,   Takiwatanga,  Trains,  Ubuntu,    Ugly Laws,   Upstander

Catatonia

Catatonia in autistics refers to pronounced motor difficulties, such as immobility, rigid posture, repetitive or unusual movements, and a decreased responsiveness to the environment.

Catatonia can manifest in different ways in autistics, including mutism (inability to speak), echolalia (repeating words or phrases), stereotypic movements (repetitive movements), posturing (assuming and maintaining unusual body positions), and stupor (a state of unresponsiveness).

Related Terms: A Chara ,    Allistic,    Aspie,    Atypical,  Autistic Burnout,   Autistic Inertia,  Catatonia,   Crip Time,   Critical Disability Studies,   Disability Justice Movement,  Disability Rights Movement,   Disability Eugenics,   Feeble-Minded,   Imbecile,   Inspiration Porn,  Masking/Camoflauging,   Microaggressions,   Neurominority,   Ofa Ahi Latu,   R-Word,   Savant,   Spoon Theory,   Takiwatanga,  Trains,  Ubuntu,    Ugly Laws,   Upstander

Happy Mother's Day

 Dedicated to the EXTRAORDINARY MOMS and DADS and PARENTS out there, 

on behalf of your extraordinary child.  

You Never Gave Up on Me

You held me in your arms, oh mother mine
When I was a mere wrinkled newborn babe
You gazed at me with love and joy
Just as all young mothers do.

I walked my first step and said my first word
With pride, you watched my every move
You expected me to walk the predictable path
Just as all young mothers do.

You watched me slip and slide away
Wondering why I didn't do what other kids do
I stopped making eye contact with you
And stopped the spoken words too

A well of sadness entered your eyes
The smile not always in place
Perplexed and puzzled
Do I know this child of mine at all?

But, you rolled up your sleeves
You never gave up on me

You took the other fork on the road
The one without the map
You struggled and searched for solutions
You fought endless battles for me

You put your fists up and took a stance
And you never gave up on me

Lost in the desert of sadness
You changed your perception of things
You summoned new strength and courage
From the unfathomable deep

You changed your whole life for me
And, you never gave up on me

You coaxed every small victory out of me
Pride overflowed from your eyes
Steps of this extraordinary child
Of quite the extraordinary mom

You do the job of a dozen people
And you never gave up on me

Exhausting is the journey you're on
Exhilarating only some of the time
I am not the typical child you thought you'd raise
New challenges lie in the path every day

To the extraordinary mom who holds my hand
And who never gave up on me.

------------------------------------------------------------------------

I wrote this poem sometime during high school. But I feel it is still so relevant even today. This poem is dedicated to all those wonderful and amazing moms and dads and parents out there who did not give up on their disabled child. Thank you for your dedication and fortitude, in rolling up your sleeves and taking on the world for us, without even knowing how to go about it.


I think back to the story of the frog who climbed to the top of the well amidst discouragement from the crowd that the task was impossible; turns out the frog was deaf so had not heard the discouragement, so made it all the way to the top.


This is what parents of the children seen as having more challenging disabilities face every day. From the get go, they are nudged to tone down expectations of their children, not to expect much. Lady Liberty did not hold up her torch of the American Dream for that child.

Over the years, I have seen many of my peers disappear one by one into the void of the system (out of sight and out of mind of society), as the once eager and enthusiastic parents reach a state of burnout and exhaustion, with this constant barragement of discouragement and lack of support. Other adult peers who have aged out of the special education system are sitting at home with their aging parents as adult day programs want “easy to manage” adults (sheep!!), even as there is a dearth of support systems for the ones with “behaviors.” It is like a battle for the classroom placements and supports during the school district years, starting all over again in adulthood for many.

Thank you to all the extra-ordinary parents out there, for your support and embrace, when the world seems to abandon us at every new stage, not just when we were children but as adults and possibly even when we are middle aged. For many with more significant disabilities, our parents and siblings are likely the only family we will ever have. I wonder who will be there as this lifelong pillar, when we are senior citizens ourselves, where we are not just battling aging issues but also the nature of our disability may mean that not all of us reach a level where we are able to take care of ourselves and have to depend on the largesse of paid staff for a decent quality of life.

Parents, Yours is truly a dedication of a lifetime. Thank you.

Microaggressions

Microaggressions are brief and commonplace verbal, behavioral, or environmental actions that communicate hostility, bias, or prejudice towards a particular group of people. These actions can be intentional or unintentional and are often committed by individuals who are not aware of the impact of their words or actions on marginalized groups.

In the context of autism and disability, microaggressions can take many forms, including making assumptions about a person's capabilities based on their diagnosis, using language that reinforces negative stereotypes about disability, treating someone with condescension or pity rather than as an equal and capable individual, or failing to make reasonable accommodations to support their needs.

These kinds of actions, while seemingly minor, can have a significant impact on the well-being and self-esteem of individuals with autism or disabilities, and can contribute to systemic inequality and discrimination. It is important to be aware of these kinds of microaggressions and strive to create an environment that is inclusive and respectful of all individuals, regardless of their abilities or diagnoses.

Self Consciousness

Self-consciousness refers to a psychological state in which an person is aware of themselves as a distinct entity, separate from their surroundings, and possesses a sense of self-awareness. It involves the ability to reflect upon and recognize one's thoughts, emotions, and actions, as well as to perceive oneself as an object of observation and evaluation by others.

Self-consciousness is a fundamental aspect of human cognition and plays a significant role in shaping our experiences, behavior, and social interactions. It is believed to emerge during early childhood as part of the development of self-identity and continues to evolve throughout a person's lifetime

Self-consciousness encompasses various aspects, including self-perception, self-reflection, self-evaluation, and self-awareness. It involves the ability to introspect and engage in self-analysis, examining one's thoughts, beliefs, desires, and intentions. It also entails being aware of one's own body and physical presence in space.

Self-consciousness also involves a social dimension, as individuals may become aware of how they are perceived by others and adjust their behavior accordingly. This can lead to feelings of self-consciousness in social situations, where people may feel concerned about being judged or evaluated by others.

While self-consciousness can influence self-esteem, they are separate concepts. Self-consciousness refers to the awareness of oneself, while self-esteem relates to one's evaluation and feelings of self-worth. 

Research suggests atypical self-consciousness in autism. 

• This study examined self-referential cognition and empathy in individuals with autism using self-report questionnaires. The findings suggested that autistics may have reduced self-referential processing and difficulties with empathy (1)
• Using functional magnetic resonance imaging (fMRI), this study investigated self-referential processing . The results indicated altered neural activation in brain regions associated with self-representation, suggesting atypical self-consciousness in autism (2).
• This longitudinal study explored self-recognition and self-consciousness in children with autism using tasks such as mirror self-recognition and pretend play. The findings suggested delayed development of self-recognition and reduced engagement in pretend play in children with autism (3).
• This review article proposed the social motivation theory of autism, which emphasizes the influence of altered self-consciousness on social behavior and social cognition in autistics. It provides insights into how self-consciousness is linked to the broader social challenges observed in autism (4).

As always research on autism is not set in stone and is still evolving.

Spoon Theory

Spoon theory is a metaphor used to describe the limited amount of physical and emotional energy available to people with disabilities. The theory was created by Christine Miserandino, a woman with lupus, to help explain to her friend what it was like to live with a chronic illness. 

The metaphor works by using spoons as a representation of a person's energy reserve for the day. Each activity, such as getting out of bed, taking a shower, or going to work, requires a certain number of spoons. People with disabilities have a limited number of spoons available to them each day, and they must carefully budget their energy throughout the day to avoid running out of spoons.

The theory has become a popular way for people with disabilities to explain their experiences to others, and it has also helped to raise awareness about the challenges faced on a daily basis. It also emphasizes the need for empathy and understanding towards people who may be struggling with challenges that affect their ability to function in day-to-day life.

In the context of autism, spoon theory can be used to explain the challenges that many autistics may face when it comes to sensory overload and social interaction.

Sensory processing issues can make everyday tasks like going to the grocery store or attending a social event incredibly exhausting. These experiences can be likened to using up spoons, or units of energy, more quickly than someone without sensory processing issues might. Additionally, social interaction can also be a source of stress and exhaustion for people with autism. Social situations can require a lot of cognitive and emotional effort, which can also deplete one's energy reserves.

By understanding spoon theory in the context of autism, people can better appreciate the energy expenditure required for autistics to navigate the world. This can lead to increased empathy and understanding, and help to create a more inclusive and supportive environment for autistics.

Ofa Lahi Atu

"Ofa lahi atu" is a phrase in Tongan that is often used to express deep love and respect.

The literal English translation of "Ofa lahi atu" is "much love to you", but its meaning goes beyond the words themselves. In Tongan culture, the expression is often used to convey a sense of gratitude, humility, and reverence for others, nature, and the divine.

In a philosophical sense, "Ofa lahi atu" can be understood as a recognition of the underlying unity and interdependence of all things. It suggests that love and respect are not only essential for personal relationships but also for the harmonious functioning of society and the natural world.

The phrase "Ofa lahi atu" can be relevant in the context of autism and disability by emphasizing the importance of love, respect, and interconnectedness. People with disabilities, including autistics, often face social, emotional, and physical challenges that can make them feel isolated and marginalized.

By expressing and acting with a feeling of "Ofa lahi atu" towards autistics, society can convey deep love and respect for autistics, affirm their dignity and worth as human beings. remind us that our interconnectedness extends beyond our immediate social circles and includes all.  It can inspire us to work towards creating a more inclusive and supportive society that values diversity, promotes empathy, and fosters mutual understanding.

Groups in the autism space community too needs to express and act with a mindset of “Ofa lahi atu’ towards each other, instead of the current vicious bickering between polarized groups of “who has the loudest voice” and undermining other groups. We can recognize each others unique strengths, be accepting of all challenges methodologies, and perspectives and work towards solutions that address a wide range of needs.

Ubuntu

I came across this word today in our Public Voice Fellowship Training. 

Ubuntu as a framework has so many things that apply to autism advocacy, research, inclusivity, belonging, and the need for increasing knowledge and solutions in the autism space. More specifically I want to highlight. 

• Community-based approach to support autistics and their families.
• Emphasis on empathy and understanding, belonging and inclusivity
• Collaboration and cooperation which means working together to increase knowledge and solutions across the autism space instead of this conflict and undermining that is going on. We can find solutions for everyone, its not a one-size fits all. 

Ubuntu is the "I" in the "We"

Ubuntu is a philosophy that originated in Southern Africa, particularly among the Bantu peoples of South Africa, Zimbabwe, and Zambia. It is a philosophy that emphasizes the interconnectedness of all things and the importance of community, compassion, and respect for others.

At its core, the philosophy of Ubuntu is based on the idea that a person is a person through other people. Its the "I" in the "We." 

This means that individuals are not defined by their own accomplishments or achievements, but by their relationships with others and their contributions to the community. In other words, one's sense of self is deeply tied to their interactions with others and their ability to make a positive impact on the world around them.

Ubuntu also emphasizes the importance of compassion, empathy, and forgiveness. It encourages individuals to see the humanity in others, to treat everyone with respect and kindness, and to forgive others for their mistakes. This is based on the belief that everyone is connected, and that we are all responsible for creating a more just and equitable world.

Sarcasm and the Literal Thinker stereotype

An autism stereotype I heard during a recent talk was "sarcasm hit-or-miss," as further evidence of a child being autistic.

But isn't "sarcasm hit-miss" is equally true of the NT population, as not everyone gets sarcasm.  

Sarcasm is not an autistic identifier and this idea seems to derive from another misconception;  

that ALL autistics must be only literal thinkers.  

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. 

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.

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)

Solutions, not more Autism days

Research and the Testable Autistic

A fundamental issue in autism research is that again and again we are testing only a narrow band of "testable autistics." 

Essentially past and current research on Autism is oversampling the same ~30% of autistics, the testable autistics. Then we assume the results apply to all, when they do no. 

I was in a research stakeholder meeting last week where another autistic talked about the variety of different research studies she had participated in over the years. 

I was thinking of how many autism research studies where I've been a participant - it was ZERO, literally!! It was not that I did not want to, I was always in the exclusion criteria zone even in autism research. 

Growing up, I used to hear about what autistics are supposed to be thinking/doing, all based on the hundreds of studies that had already been done. And the thought was -  the results don't reflect me. Do I have the wrong dx?

We badly need to RETHINK RESEARCH METHODOLOGY along with new NEW TECHNOLOGY , so that we can expand this ZONE OF TESTABLE AUTISTICS so it's more representative of even those with high support needs like me. 

We can expand the range of testable autistics only if we use methods that don’t need fluent oral communication or fluent motor manipulation or expect a person to sit absolutely still. 

We need every neurodiverse/neurotypical mind thinking about this!!

So, what kind of methods can we use to extend the range of testable autistics.

We need to find answers and solutions for all autistics. THIS IS URGENT. 

Multilingual and Autism

Multilingual and Autism

Therapists often tell families to only speak English so as to not confuse the autistic child. I think that's not a good idea as it results in a loss of cultural identity. During my elementary years there was so much time spent on teaching me St Patrick's day (what relevance do green men and rainbows have for me) instead of say Diwali (more relevant to me). Many of us have extended family who only speak their native tongue. Life exists outside of the special education classroom and therapy. 

Autism loves to get stuck on sameness, so you may be inadvertently encouraging that very thing. For instance, in my early years - I used to watch Thomas the Tank engine pretty obsessively. I would avoid the Ringo Starr narrated version but loved the George Carlin version - the Brit accent felt like an alien foreign language. 

It's good to also be exposed to different accents associated with the different languages for another important reason. We will be be surrounded by caregivers/educators with diff accents. No one thinks about this aspect. 

I had a class aide in elementary who's accent I never understood. It was not due to cognition on my part, how could I respond if I have not understood the question/instruction which as far as I was concerned was in an alien language.  Sometimes I would try to watch her lips, trying to synchronize the visual of her lip movements with the audio I was hearing - it was a lot to process and it was often easiest to give up and engage in stimming behaviors (comforting) instead. Rather ironical as she was supposed to be teaching me. No one thinks about this aspect. 

Anyway, I did get over the Ringo Starr thing eventually. Interestingly, the accent thing is not so striking in singing. I love Beatles music (simple lyrics that you can actually get your mouth around) and i did not realize Adele was Brit till i saw her talk at an awards ceremony.