Wheels On My Back

Wheels On My Back is...back! As passionate as I am about the neurodiversity paradigm it turns out I'm not actually that passionate about solo podcasting. Something about speaking into a void and lots of ~steps~ to produce an episode... but I'm figuring it out! Because this is an important topic to me and we're gonna keep it going!

Anyway, the first part of episode 5 is addressing why I'm so comforted by internalizing the phrase "thank you for being"  - especially as somebody who was diagnosed ADHD in childhood and autistic in adulthood as I worked through healing my CPTSD.

I think folks who are diagnosed ADHD as adults tend to romanticize early diagnosis, but without the neurodiversity paradigm, that's still not a great time either.

Here's the post by What In The ADHD I reference. I think this infographic does a powerful job of illustrating why growing up neurodivergent is so difficult, whether your neurodivergence is recognized or not.

The second part of the episode is about Monotropism - or having an interest-based attention system, which is something both ADHDers and autistics share. There's a great tip in there for teachers and parents, so definitely listen if you know a kiddo with an intense interest. And, if you're into dogs, Broadway, the neurodiversity paradigm, astrology, or soapmaking....we could probably be friends :)

Also! I have and Etsy shop where I sell my soap now. If you've learned something on this podcast and want to support me, search "WheelsOnMyBack" on Etsy. Here's a link.

Or, hire me for neurodiversity consulting. email jess at jessedelstein dotcom

Hope you like the episode! TYFB!

Jess Edelstein is an award-winning entrepreneur (Shark Tank, Forbes 30 Under 30, EY Winning Women), #actuallyautistic neurodiversity advocate, mental health enthusiast, meditator, dog lover, Broadway geek, soap maker, idealist, and in general a multi-passionate nerd inspired by making the world a safer place for all. She’ll talk your ear off if you let her, so starting a podcast just made sense. She likes it when things make sense. Unlike writing her own bio in the third person. Why is this even a thing? Ok I’m gonna stop typing n

If you look up the criteria for a “highly sensitive person” or HSP, you’ll find a long list of autistic traits and the conclusion that 20% of the population meets the criteria for “HSP”, and that it’s commonly attributed to a combination of genetics and early environment.

Hmm. This has a lot of autistics online wondering (we do have pattern seeking minds and bottom up thinking processes after all!)…could HSP - a nonpathologized and dare I say ~trendy~ term, be nothing more than an ableist euphemism for A U T I S T I C??

Many of us think so!

Of course, not all autistics are highly sensitive but the ones who are tend to have more internalized or masked autistic traits that tend to be missed or misdiagnosed. This is a very common experience for women and AFAB individuals who tend to be identified as autistic later in life, if at all. 

Unfortunately, most clinicians still operate from a deficit-based model of autism (even though that’s being steadily debunked by current research)

So it makes sense that in the absence of validation from their doctors and therapists (plus internalized ableism) many people turn to HSP as a way to describe their lived experiences. 

As HSPs know, being highly sensitive isn’t a disorder or illness, although heightened sensitivity can be socially or physically disabling in certain over-stimulating environments. Kind of like….autism? 

!! Imagine how inconvenient it would be to autism industry and research if it turns out that 20% of the population is actually autistic and it’s just a neurotype and not a disorder after all!

For more thoughts on this topic, plus my experience getting a clinical diagnosis and why I still advocate for the validity of self-identification - check out episode 4 of Wheels On My Back. 

For more about coaching and consulting - sing up for my newsletter at jessedelstein [dot] com

email: jess [at] wheelsonmyback [dot] com

follow on instagram: @wheelsonmyback  

Resources:
The official website of HSP researcher Elaine Arom:
https://hsperson.com/faq/hs-or-asd/

“FAQ: How does sensitivity differ from Autistic spectrum disorders (Asperger’s Syndrome, etc.)?

A: Autistic diagnoses can be complex and dynamic. This area is not Elaine’s specialty, and she does not keep up on current research. This topic deserves accuracy and respect. Therefore, we advise those looking for more information to seek out autism experts. Just be certain they understand something about innate temperaments such as high sensitivity as well.”

Autism Identity and the “Lost Generation”: Structural Validation of the Autism Spectrum Identity Scale and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum

https://www.liebertpub.com/doi/full/10.1089/aut.2019.0069

Our perspective may be inconvenient to the status quo…but autistic adults have insight into autistic kids that every parent can benefit from. 

On this episode, more thoughts on Mark Rober’s April 30 celebrity "Color the Spectrum" event, the counter-fundraiser #AutisticNow organized by the #ActuallyAutistic community  on the same day, and why we care so dang much about the next generation or our neurokin not growing up traumatized in the name of support (weird this has to be explained but okay). 

Plus: got my second pfizer dose (yay!), time travel, meta commentary, and some not-so-subtle shade at the wellness industrial complex. 

Thank you for being <3

Trigger warning: ABA, orthorexia

References/Resources

US Department of Defense Memo about ABA: https://health.mil/Reference-Center/Congressional-Testimonies/2020/06/25/Annual-Report-on-Autism-Care-Demonstration-Program?fbclid=IwAR2AbWTljX1_eQz8mYI8gtolJBI1DNkmPv2bUAbiKzHoEzfoYyKX0zH4QNs

Alfie Kohn: Autism and Behaviorism: New Research Adds to an Already Compelling Case Against ABA (National Education Policy Center): https://nepc.colorado.edu/blog/autism-and-behaviorism?fbclid=IwAR1KHDHTwbMAp60x4UsKkyk-hThSAs2d3-YOLgiU9PiUO_kDAOvrreZ9rHM 

PDF from the Therapist Neurodiversity Collective about social skills training, masking, and the double empathy problem: https://therapistndc.org/wp-content/uploads/2020/10/Social-Skills-Training-The-Research.pdf

Checklist for identifying sources of aggression: https://wearelikeyourchild.blogspot.com/2014/05/a-checklist-for-identifying-sources-of.html?m=1

“Appearing to Enjoy Behavior Modification Is not Meaningful”: https://www.realsocialskills.org/blog/appearing-to-enjoy-behavior-modificiation-is-not?fbclid=IwAR3LrHMvRqdXaPJVUFQwZbLW9ZCZd37JjpUxOVRAJFKIBbUHHiow9HF4jaU 

Autistic led Facebook group for neurotypical parents to learn from Actually Autistic (AA) adults (I’m personally very active in the comments!): https://www.facebook.com/groups/autisminclusivity/?ref=share

Sincerely, Your Autistic Child: https://www.amazon.com/Sincerely-Your-Autistic-Child-Acceptance/dp/0807025682

The Explosive Child (5th Edition): https://www.amazon.com/Explosive-Child-Understanding-Frustrated-Chronically/dp/0062270451/ref=sr_1_1?dchild=1&keywords=the+explosive+child&qid=1619466162&s=books&sr=1-1 

Autistic Self Advocacy Network (ASAN):  autisticadvocacy.org 

Autistic Women & Nonbinary network (AWN): https://awnnetwork.org/ 

The Neurodiversity Movement

On episode 2, I discuss the neurodiversity paradigm and the social justice movement associated with depathologizing neurodivergences. 

In other words, I talk about why society needs a shift in perspective around autism and ADHD with the help from a November 2020 interview with Nick Walker, PhD on Liebertpub titled “Towards a Neuroqueer Future”.

There’s a LOT of information packed into this half hour, which serves as an overview/crash course to familiarize listeners with topics that will continue to come up on the podcast and honestly, topics I want you to be aware of whether you’re neurodivergent yourself or know/work with/parent/teach somebody who is. 

I also introduce an idea I have that perhaps antivaxers could pivot to neurodiversity advocacy, which may not be the hot take I think it is but shared just in case ¯\_(ツ)_/¯ 

Plus, commentary on the upcoming Color The Spectrum fundraiser and why neurodiversity advocates are NOT happy about it (#nothingaboutuswithoutus!!!)

Thanks for listening! And thank you for being <3

References:
https://www.liebertpub.com/doi/full/10.1089/aut.2020.29014.njw
https://en.wikipedia.org/wiki/Social_model_of_disability
https://soyoureautistic.com/neuro-diversity-and-neuro-divergence/
https://autisticadvocacy.org/
https://awnnetwork.org/
https://lovingdifference.mn.co/

Jess Edelstein is an award-winning entrepreneur (Shark Tank, Forbes 30 Under 30, EY Winning Women), #actualyautistic neurodiversity advocate, mental health enthusiast, meditator, dog lover, Broadway geek, soap maker, idealist, and in general a multi-passionate nerd inspired by making the world a safer place for all. She’ll talk your ear off if you let her, so starting a podcast just made sense. She likes it when things make sense. Unlike writing her own bio in the third person. Why is this even a thing? Ok I’m gonna stop typing n

Note: This episode originally published in 2021 has been re-recorded to address audio quality editing errors and to update some language. In other words, my perfectionism got the best of me :) Thanks for listening!

This is the most in-depth I've ever shared publicly about my experience growing up neurodivergent. 

The goal for this episode is to illustrate how the current medical and educational models fail to meet the needs of ND kids (and have for a long time), and what neurodiversity advocates mean when we say that all ND behavior is communication.

If you teach or parent neurodivergent kids with challenging behaviors, I hope you can listen with an open mind.

Though this is my story, certain elements are far from unique. 

Content warning: bullying, medication, caregiver abuse, support classrooms, meltdowns, tics, behavior contracts, planned ignoring, helplessness, suicidal ideation, digestive problems, masking, internalized ableism, and more. 
 

Jess Edelstein is an award-winning entrepreneur (Shark Tank, Forbes 30 Under 30, EY Winning Women), #actualyautistic neurodiversity advocate, mental health enthusiast, meditator, dog lover, Broadway geek, soap maker, idealist, and in general a multi-passionate nerd inspired by making the world a safer place for all. She’ll talk your ear off if you let her, so starting a podcast just made sense. She likes it when things make sense. Unlike writing her own bio in the third person. Why is this even a thing? Ok I’m gonna stop typing n

In this pre-episode/trailer/intro thingy, I describe where the phrase “wheels on my back” comes from and share little about me and why I’m starting this podcast. I briefly discuss the neurodiversity paradigm vs the pathology paradigm, why it matters, and why #actuallyautistic adults like me are speaking out at all. At the end of the episode, I introduce the podcast’s theme song. 

Jess Edelstein is an award-winning entrepreneur (Shark Tank, Forbes 30 Under 30, EY Winning Women), #actualyautistic neurodiversity advocate, mental health enthusiast, meditator, dog lover, Broadway geek, soap maker, idealist, and in general a multi-passionate nerd inspired by making the world a safer place for all. She’ll talk your ear off if you let her, so starting a podcast just made sense. She likes it when things make sense. Unlike writing her own bio in the third person. Why is this even a thing? Ok I’m gonna stop typing n

ig: @wheelsonmyback

wheelsonmyback at gmail dot com