Targeted interventions for autism don't need creation of more new labels.
The issues that need help, were present there before the label creation and still exist years after the label.
In another 5-10 years, another new catchy trademarked label will appear
This day 2 years ago.
OMG. My very last undergrad class at Berkeley.
Berkeley Haas Scholars at work.
https://link.springer.com/article/10.1007/s40617-023-00833-w
Good grief is all I can say.
Adding the prefix of "Kind" to something does not automatically make anything automatically Kinder. As is peppering a paper with the word "Kind" to sublimely influence you that it must be kind.
And a sample size of 4 autistics in the study makes this a valid method, how?
And what did this "kind" translate to exactly. when a therapist drives you to the point of a tantrum in the first place, then offers to hold your hand, and saying "I can see you are frustrated."
Is this a new marketing strategy by the (massive-profits with no accountability) ABA industry to make even more profits of desperate families.
Please don't joke around with studies trying to whitewash stuff. This is not helping.
Thoughts on the role of editors, journalists, publishers on fostering broader societal inclusivity
1. Irresponsible reporting: I absolutely am irritated by articles that to try to stir up old controversies or conspiracy theories trying to malign/discredit the most marginalized autistics, while pretending to be their champion. Its hypocritical and magazines should not be printing this stuff. In what way is this helping us. It's such a total waste of airtime, because the eye on the ball should move forward, towards progress and solutions so the marginalized can move forward.
2. Understanding 'Evidence-Based' in the context of Autism Heterogeneity: Blindly reporting that something is evidence based for autism is not helpful because practitioners and educators literally take that at face value, and do a blanket application for ALL of autism. In reality evidence based only applies to a small profile (discussed in my recent Time magazine article), which means Evidence Based Interventions have to be taken with spoonfuls of salt for the rest of autism.
Ergo, if "evidence based" does not work for an autistic, it's not the fault of the autistic for not progressing, it's a failure of research that has not found solutions for them.
Because the consequence for the autistic who does not improve with this evidence based stuff is extreme. They are basically written off and kept in special programs and group homes. And then we complain that this group is eating up resources and asking for attention.
3. Media needs to call out the Utter Lack of Action: An example is that GI issues were being discussed when I was diagnosed two and half decades ago. Earlier this year, there was an article which made it seem linking GI and autism was a brand new discovery. The sad part is that because there has been no movement in finding explanations and solutions on this front for two and half decades, it looks like it's a brand new issue when it's not.
4. Including a call to action. One magazine told me that I should not be including a call to action. Which kind of seemed counterintuitive because then these disability stories primarily become objects of pity and sympathy or inspiration porn. While this may increase readership, they don’t do anything to help us. We want the story to generate action because action is the actual impact.
Versions of this article: Academic/Scientific Audience and PlainSpeak for Lay Reader
Articles on other topics in #PlainSpeak
Autism Space seen as profit making space by Private Equity
This is a continuing and troubling trend in autism.
'...private equity investments per year tripled or quadrupled from 2018 to 2021 compared to 2015.
...expected investment to continue at breakneck speed
“...They needed to start showing profits and revenue that match their valuation. … So at some point, [investors] need to start seeing a return on their investment,”
...autism therapy space could be at the point of the investment life cycle where investors are pressuring operators to shift from scale to efficiency and profitability.
...opening clinics that reach targeted patients while being “financially healthy,” Marsh said.
Neurodiversity is a concept that views neurological differences as natural and valuable variations of human diversity.
Neurodiversity primarily includes disabilities like autism, ADHD, dyslexia, dyspraxia, and Tourette syndrome, along with disabilities that are labeled psychiatric in nature . It tends to focus on conditions that affect cognition, communication, sensory perception, and behavior. Disabilities that are less often included in discussions of neurodiversity include those that are purely medical in nature or those that do not involve differences in neurodevelopment, such as physical disabilities like spinal cord injuries or muscular dystrophy.
In fact the name of the unique makerspace disability lab at UC Berkeley is "Rad Mad Disability Lab". It was a privilege for me to lead Team Propaganda during my years at that lab.
"Disability only becomes a tragedy when society fails to provide the things needed to lead one's daily life." - Judy Heumann (Disability Rights Activist)
I was also fortunate enough to work on creating ~40 case studies on low resource countries that have implemented the UNCRPD, as a research associate at Prof Victor Pineda's "World Enabled"
Sensory and Motor Challenges in Autism, ADHD, and AuDHD
Autism and ADHD each bring unique sensory and motor challenges, but when they co-occur in the form of the combined diagnosis of AuDHD (Autism and ADHD), these difficulties become more complex and intertwined. Sensory processing and motor coordination are integral to navigating daily life, and disruptions in these areas can affect everything from focus and comfort to physical activity and social interactions. Understanding the nuances of sensory and motor challenges in autism, ADHD, and AuDHD offers valuable insights into how individuals with this combined diagnosis (AutDers)experience the world.
Both autism and ADHD present distinct sensory processing challenges, but they manifest in different ways.
Autistic individuals frequently experience heightened sensitivity to sensory stimuli. This can make ordinary environments, like busy streets or noisy classrooms, overwhelming.
Hypersensitivity: Autistics may find certain stimuli, such as bright lights, loud noises, or specific textures, overwhelming or even painful. Sensory overload is a common occurrence, leading to meltdowns, anxiety, or the need to withdraw from overstimulating environments.
Difficulty with Sensory Modulation: Autistics often struggle with modulating their responses to sensory input. Even minor changes in their sensory environment can provoke strong reactions, like a startle response or a need to leave the space immediately to calm down.
In ADHD, sensory processing challenges often manifest in the opposite direction, with individuals seeking out sensory input to maintain attention.
Sensory Seeking: ADHDers engage in behaviors to increase sensory stimulation. This might involve fidgeting, tapping, doodling, or moving around constantly to help regulate focus and engagement with tasks.
Distractibility: ADHD is also associated with difficulty filtering out irrelevant sensory input. In noisy or visually stimulating environments, ADHDers may struggle to focus on tasks as their attention shifts rapidly between multiple sensory inputs.
In AuDHD, sensory challenges become even more complex, combining the hypersensitivities of autism with ADHD’s craving for stimulation. This results in a dynamic and sometimes conflicting relationship with sensory input.
Sensory Hyper- and Hyposensitivity: Individuals with AuDHD (or AutDers)may fluctuate between being overwhelmed by sensory stimuli (autism) and actively seeking out more intense sensory input to maintain focus (ADHD). This creates a push-pull dynamic, where one day a noisy environment may be unbearable, and the next day, they might seek out a stimulating setting for focus.
Sensory Overload vs. Sensory Seeking: An AutDer might be overstimulated in a chaotic, noisy environment but feel distracted or restless in a quiet, low-stimulation setting. This unpredictable relationship with sensory input can make it difficult to regulate responses and maintain comfort throughout the day.
Motor coordination issues are common in both autism and ADHD, but the manifestations are distinct for each condition.
In autism, motor challenges often manifest through repetitive behaviors and difficulty with motor planning.
Stimming: Autistic individuals frequently engage in repetitive movements like hand-flapping, rocking, or spinning (known as stimming). These behaviors help manage sensory input or emotional regulation and can serve as self-soothing mechanisms.
Dyspraxia: Many autistic individuals experience motor planning difficulties, known as dyspraxia. This can affect tasks that require fine motor skills, like handwriting or using utensils, as well as gross motor skills, such as running or jumping. This lack of coordination can lead to frustration or a reluctance to engage in physical activities.
Motor challenges in ADHD are often characterized by a need for constant movement and impulsive actions.
Motor Restlessness: ADHDers often feel the need to move constantly, whether it’s tapping their feet, pacing, or fidgeting. This restlessness helps them stay engaged but can become disruptive in environments that require stillness or focus, like classrooms or meetings.
Impulsive Movements: ADHD can also lead to impulsive, poorly timed movements, such as acting without thinking through the consequences. This may result in accidents or difficulty executing tasks that require careful motor planning, like playing sports or handling delicate objects.
When autism and ADHD co-occur in AuDHD, motor challenges can be exacerbated, blending the traits of both conditions into a complex pattern of movement and coordination difficulties.
Increased Stimming and Restlessness: AutDers may find that their need for repetitive movements (stimming) increases due to ADHD’s impulsivity and restlessness. While stimming can help regulate sensory input and focus, it can also interfere with tasks that require stillness or sustained concentration, such as schoolwork or meetings.
Motor Coordination Issues: Tasks that require both fine and gross motor coordination, like handwriting or playing sports, may be especially difficult for AutDers
. Autism’s motor planning challenges combine with ADHD’s impulsive and poorly timed movements, leading to clumsiness, accidents, or difficulty completing activities that require precision.
Balance and Spatial Awareness: Vestibular processing issues in AuDHD may also affect balance and spatial awareness. This can make it harder for individuals to maintain steady footing, avoid obstacles, or participate in physical activities that require coordinated movement, such as dancing or playing sports.
Tasks that require integrating sensory input with motor responses, like playing catch or cooking, can be particularly difficult for those with AuDHD.
Individuals with AuDHD may struggle with tasks that require them to coordinate sensory input with motor responses. Autism’s delayed sensory processing may make it harder to time movements accurately, while ADHD’s impulsivity can cause poorly timed actions.
Sensory-motor feedback—the brain’s ability to judge how the body interacts with its environment—may also be impaired in AuDHD.
The combination of autism and ADHD introduces several more nuanced sensory and motor issues that are worth noting.
Individuals with AuDHD may have fluctuating abilities to regulate sensory input. Some days they might be able to tolerate sensory stimuli that overwhelm them on other days. This inconsistency can make sensory regulation unpredictable and lead to confusion about what environments or stimuli will be manageable.
Managing sensory overload, stimming, and motor coordination issues can be physically exhausting for individuals with AuDHD.
Sensory Exhaustion Coupled with Restlessness: Sensory overload is tiring for anyone, but in AuDHD, the need to move (due to ADHD) can persist even when the body is exhausted. This can lead to burnout or physical fatigue, as the individual’s body is pushed beyond its limits without sufficient rest.
Cognitive Fatigue: The constant effort required to process sensory inputs and manage motor movements can lead to cognitive fatigue. This might manifest as irritability, difficulty concentrating, or emotional dysregulation, especially after extended periods of sensory-motor effort.
Sensory and motor challenges can significantly affect learning, daily tasks, and social interactions for those with AuDHD.
Learning Challenges: In academic environments, AutDers may struggle with activities that require fine motor skills (e.g., writing, using school supplies) or tasks that involve sensory processing (e.g., focusing in noisy classrooms). The combination of sensory sensitivities and motor difficulties can affect confidence and participation in both academic and social settings.
Daily Living Skills: Everyday tasks like cooking, cleaning, and self-care can become overwhelming due to the sensory and motor challenges in AuDHD. Sensory overload might make it difficult to shop for groceries, while motor coordination issues can make tasks like brushing teeth or preparing meals exhausting.
The sensory and motor challenges of AuDHD are intricate, multifaceted, and unique. AutDers often face conflicting sensory needs—balancing between hypersensitivity and the craving for stimulation—alongside motor coordination issues that affect both fine and gross motor skills. These challenges can lead to frustration, fatigue, and difficulty navigating daily tasks, learning, or physical activities.
