Potentially Waiting

 [After 350+ poems, who’s counting….]

Context: This reflection is a portrait of autistic temporality, anticipatory anxiety, sensory vigilance, and meta-awareness, capturing how a simple wait becomes a cognitive and embodied epic. Its  the layered experience of being autistic+ADHD (AuDHD); how the mind loops back on itself in preparation, observation, and reflection; how even stillness is saturated with motion inside. Something as ordinary as arriving for an event transforms into an intricate internal process, filled with precise timing, sensory tension, and ongoing mental calculation. Many AuDHD folks like me, experience heightened sensitivity to time, environment, and social context, not as an overreaction, but  as the everyday reality of how our minds and bodies move through the world.

POTENTIALLY WAITING

Observed start time: metaphysical.

POTENTIALLY, my mind thinks I’m gonna be sooo late.

INHALING, internal urgency, I might miss everything.

EXHALING, every what-if knotted into my chest.

DEFINITELY, I left with hours to spare for the meeting, just in case.

POTENTIALLY, I’m way too early.

INHALING, the loudness of silence in a room not yet occupied.

EXHALING, the weight of showing up too exactly.

DEFINITELY, first by a statistically significant margin.

POTENTIALLY, time is not moving.

INHALING, I’m just waiting and waiting.

EXHALING, the theory that time is elastic.

DEFINITELY I’ve aged three internal years.

POTENTIALLY, no one minds the flickering light.

INHALING, the flicker overhead pretending to be still.

EXHALING, once, twice, don’t look again.

DEFINITELY, it’s Morse coding its way into my amygdala.

POTENTIALLY, I’ve sat too still for too long.

INHALING, the numb buzz creeping up my back.

EXHALING, stimming I hope no one notices.

DEFINITELY, my body is sending status updates I never subscribed to.

POTENTIALLY, everyone else seems chill.

INHALING, background noise pretending not to be foreground.

EXHALING, the urge to catalog them all.

DEFINITELY, I’m indexing each throat-clear and chair-squeak like a crime scene analyst.

POTENTIALLY, I’ll forget this whole feeling.

INHALING, the illusion this moment will fade.

EXHALING, into a future that always remembers.

DEFINITELY, I’ll relive it at 2am during an unscheduled brain audit.

POTENTIALLY, I’m overreacting.

INHALING, the question, again.

EXHALING, the answer, unchanged.

DEFINITELY, but what else would I be doing while waiting?

Estimated wait time: unknown.

UNESCO Training

At the next UNESCO training for our project 

Developing a strong organizational vision & strategy. OKRs and KPIs

UNESCO x SEVENTEEN - Going Together – For Youth Creativity & Well-Being 

Developing a strong organizational vision & strategy. OKRs and KPIs

Training Reflections

Structuring Change: Amplifying Autistic Wellbeing through Strategy and Vision

Today’s  training offered was a call to clarify our impact. To transform values like inclusion into operational frameworks that deliver. Our project—Amplifying Autistic Wellbeing fit right into this conversation. But what made today’s training especially useful was how it broke down abstract ideas like vision and strategy into practical tools like PSMART, OKRs, and KPIs.

We started with a a foundational question: What is your big, bold outcome? 

For us, the answer is right there in the title, Amplifying Autistic Wellbeing. Unpacking that meant we are focusing on amplifying the voices of autistics who are more impacted by their disabilities from the global south, as they often get left out of the autism conversations.  Our core question revolves around what wellbeing means and we are going to explore this via art and other forms of expression. We need to start with many such small steps to get to inclusion and belonging, which is our big bold outcome.

🧠  PSMART in Action -  Grounding Our Goals

The PSMART model helped us evaluate if our goals are

• Performance-Oriented: We’re actively running a hybrid symposium and building an international network. (Tentative date Sep 15, 2025, UK)
• Specific: Focused on the Global South and high-support needs (HSN) autistic youth aged 18–30.
• Measurable: Targeting 100+ network participants.
• Achievable: Backed by community partnerships, accessibility design, and UNESCO’s support.
• Relevant: Aligns with UN SDGs (3, 4, 10, 16) and fills a critical gap in neurodiversity discourse.
• Time-Bound: Clearly mapped from April–November 2025.

It was reassuring to see that the planning we had already done naturally aligned with this model—and where it didn’t, we now have a better structure to adapt.

🧠 Vision vs. Strategy: Where We’re Going, and How We Get There

The training’s diagram of Vision vs. Strategy reminded us that.

• Vision is the dream: A world where autistic youth define and lead the conversation on wellbeing.
• Strategy is the plan: Use participatory, creative, and accessible platforms (like our hybrid symposium) to spotlight their voices and translate them into policy and research.

This clarity matters. We’re not just hosting an event, we’re designing systems of representation.

OKRs (Objectives & Key Results) vs. KPIs (Key Performance Indicators)

Category	OKRs	KPIs
Definition	Actionable goals with measurable outcomes	Metrics that track business performance
Basis	Company missions & aspirations	Past results & current projects
Criteria	Bold, aggressive goals	Steady benchmarks
Purpose	Motivation & alignment	Evaluation & tracking
Duration	Quarterly or yearly	Variable (weekly, monthly, etc.)
Variation	Updated each cycle	Often consistent across cycles

🎯 OKRs: What Success Looks Like

We mapped out our OKRs like this.

Objective: Center HSN autistic youth in wellbeing and policy discourse.

• KR1: Receive ~100 creative submissions using any mode of communication or creative expression. 
• KR2: Co-author research and policy documents 
• KR3: Establish an international network of 100+ individuals committed to inclusive advocacy

These OKRs are not just milestones—they’re mission checkpoints. They ensure we’re staying accountable to our community, not just our calendar.

🧠 KPIs: Measuring Impact Without Losing People

We also reflected on how our KPIs blend quantitative and qualitative indicators

• Quantitative: Number of submissions, participants, countries represented, website engagement
• Qualitative: Participant feedback (via visual surveys, testimonials, videos), policy influence, and narratives of change

As discussed in training, KPIs aren’t just for funders—they’re mirrors for internal growth.

🧠 From Notes to Practice: Why This Matters 

Studying today’s frameworks in the context of our project made one thing clear: HSN autistic individuals are missing from the definition of success.

The structures we learned today help us push back on that. Not by overhauling the system, but by remapping it to include everyone—especially those often written out.

Using creative expression as data.
Treating stimming videos as valid submissions.
Centering autistic youth as policy co-authors.

That’s our strategy. That’s our KPI for success.

🧠 Final Reflection

The UNESCO training emphasized that big visions need bold structure. And we’re here for it.

 

 "When you say positive psychology in the context of autism, what comes to mind immediately is the image of people with autism thriving and flourishing, and moving beyond surviving. It boils down to that! We need to see real solutions that help autistics achieve a quality of life that goes beyond mere existence." - Hari Srinivasan 

Read on... https://www.liebertpub.com/doi/10.1089/aut.2024.38246.pw

Autism Space seen as profit making space by Private Equity

 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. 

https://bhbusiness.com/2022/07/22/why-the-massive-investment-in-autism-companies-created-a-ticking-timebomb/

https://www.psychologytoday.com/us/blog/giving-voice/202410/how-reasonable-are-reasonable-accommodations-at-work

Neurodiversity-lite, a commercial view, often promoted by corporations, risks prioritizing profit-driven motives over true inclusivity, focusing more on leveraging unique skills for innovation rather than addressing the broader needs of disability employment.

 

 

It is important to immerse disabled children in multiple languages from the beginning—doing so will enrich their understanding of the world, strengthen their cultural connections, and help them connect with both the wider community and their own families.

Read Full Article at unesco.org...

 Excerpts from the Foreword, I got to co-write with the legendary Dr Temple Grandin.

Role of Media in fostering inclusivity

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.

At the next Training

 

I got to co-write the Foreword for this book with Dr Temple Grandin.

 

 I got to co-write the Foreword for this book with Dr Temple Grandin.

"Dr. Grandin and I were shaped by different worlds—she grew up in a time when autism was little known and with zero communities. I grew up in an era where autism increasingly became an everyday word. Despite progress, our knowledge of autism remains incomplete. Solutions must span the entire spectrum and lifespan. " - Hari Srinivasan

I got to co-write the Foreword for this book with Dr Temple Grandin.

 

What is considered "normal" behavior is an ever-moving target, making it nearly impossible to meet these expectations. This creates a stereotype threat, where there’s constant pressure to navigate the fine line between conforming to or defying stereotypes about disability.

Read Full Article at

 https://www.psychologytoday.com/us/blog/giving-voice/202409/caught-between-tears-and-stoicism