Neuroversity

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We are going back to basics, an introductory 101 level course, if you will, and taking an in-depth look at what it means to be neurodivergent.  The definition as well as who gets to decide if someone is, in fact, neurodivergent.  Because, much like many things, there is not one definitive answer on this.  Depending on who you ask, neurodivergence can look many ways.  Which has led me to the question:

•  what exactly is a neurodivergent brain?
•  who gets to gatekeep whether an individual “gets” to claim themselves as neurodivergent? 

The work of Kassiane Asasumasu, a multiply neurodivergent neurodiversity activist, who coined the terms “Neurodivergent” and “neurodivergence” in 2000 and Dr. Nick Walker, an autistic writer and educator that is best known for her foundational work on the neurodiversity paradigm and the development of the term “neuroqueer” helped inform this episode.  You can find more information about them here:

Kassiane Asasumasu quote:

https://sherlocksflataffect.tumblr.com/post/121295972384/psa-from-the-actual-coiner-of-neurodivergent

Research and work by Dr. Nick Walker:
https://neuroqueer.com/neurodiversity-terms-and-definitions/
https://neuroqueer.com/essays/

To learn more about Neuroversity, please visit our website:
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Today we are talking about neurodivergence in the black community and the intersection of race and disability.  And  when it comes to breaking down barriers related to autism in the black community, no one does it with more passion and clarity than Maria Davis-Pierre, a licensed mental health counselor, autism awareness advocate and founder of Autism in Black.

As the parent of two autistic children, and being autistic herself, Maria understands firsthand the isolation, shame and stigma that often accompanies an autism diagnosis. Armed with that knowledge, she uses her professional expertise to connect with and empower Black parents of autistic children. Through Autism in Black, she also provides essential training to organizations so they can more effectively serve the Black disability community.  And today, she is doing that for me and for the listening audience.

Resources mentioned in this episode:
Autism in Black 2022 Conference
June 24-26 2022
https://www.autisminblack.org/conference22/?afmc=25

Autism in Black
https://www.autisminblack.org/

Supernova Momma
https://supernovamomma.com/

Asiatu, Intersectional Autistic Coach
https://www.asiatucoach.com/

Morenike Giwa Onaiwu
https://morenikego.com/

Joy F Johnson
https://joyfjohnson.com/

For more information on Neuroversity, please check out our website:
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Today's episode is about ADHD.  Specifically though about ADHD in women, and with a later diagnosis.  
We talk all about:

• diagnosis without context
• medical vs self diagnosis
• masking vs mirroring
• rejection sensitivity dysphoria 
• prevalence of queerness in the neurodivergent

And so much more!  It's a great primer on ADHD and I'm looking forward to learning more.

More about Lisa Hicks:
Lisa is the owner of Lisa Hicks Coaching and has her Honours Bachelor of Arts in Psychology from the University of Western Ontario and is a certified Spiritual Life Coach. She is a queer, quirky, neurodivergent, Mom of 2 and lives with her kids and husband of 10 years in Ontario.

She has a team of 3 incredible coaches on her team, each with unique specialties and plans to add many more.
Coaching Specializations: 

• ADHD and Neurodivergence
• Sensory and Emotional Disregulation 
• Negative and Intrustive Thoughts
• Parents struggling to navigate life with children

Lisa  was diagnosed with ADHD when she was 18 years old but was never told what that meant. It wasn't until she was 34 and saw a relatable TikTok video that had her finally understanding why her brain worked the way it did.  

Website: https://www.lisa-hicks.com/
Instagram: https://www.instagram.com/thatlisahicks/

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In this episode, Jessica speaks with Mari Cerda, BCBA, who is the co-founder of The Lighthouse Learning Center and The Leap Institute.  What follows is an important and nuanced conversation about:

• What IS ABA?
• What is the history of ABA within the autistic community and the field of Behavioral Analysis?
• How does the concept of "duality" negatively impact our culture, and more specifically the autistic community?
•  How can we increase our own "cultural humility"?
• What  does the term "neurobilingual" mean?
• Does the autistic community need to take a hard look at their own ableism within the community?

About Mari Cerda:
Mari Cerda, an indigenous-Mestiza woman, wife, mom of three, autist, and board certified behavior analyst.  She is the co-founder of  The LEAP Institute (https://www.leapaba.org/ ), a non profit whose mission is to increase equitable access for marginalized groups entering the field of ABA through quality supervision and support.  She is also the founder of The Lighthouse Learning Center (https://www.lighthouselearning.org/ ), a center dedicated to providing a variety of support and services to children and families in the West Texas area.

Autistic Community  Content Creators Mentioned in the show:
PLEASE FOLLOW AND SUPPORT THEIR WORK

Tiffany Hammond
Writer
IG: @Fidgets.and.Fries

Lauren Melissa Ellzey
Autistic Self Advocate
IG: @autienelle

Camille Morgan
Podcaster
Love, Sex, and Applied Behavioral Analysis
IG: @lovesexaba

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Join me as I have a conversation with the most important autistic voice you will ever hear on this podcast, my daughter Grace. 

This is not an inspirational story.  This is not a sad story. 
This is Grace's story.   
How she remembers finding out she's autistic.   How she sees herself as a neurodivergent teenager.  How she feels about this podcast, and what she is looking forward to in her future. 

One story. 
One autistic experience. 
And I've never been more proud to put it out into the world.  Because one story can change everything.  Just like she has forever changed me.

About the Guest:
Grace Kidwell is a 15 year old freshman from Alexandria, VA.  She is a member of her school dance team, loves to read, wishes she could travel more, and adores her dog Derby.  

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Depends on who is doing the celebrating.

it’s April, which means Autism Awareness Month.  And April 2nd is World Autism Awareness Day.  You’ll see landmarks like the White House and the Empire State building lighting it up blue.  And Neurodiversity trainings will be occurring all month long in businesses and schools promoting neurodivergent affirming practices.  And one would think, “this is a good thing”, right?  Well, it’s definitely a thing.  A complicated thing.  There is a lot of background and history surrounding this month-and this seems like a great time to learn a little about at it all.  

On this episode you will learn:

• The history of Autism Awareness Month and World Autism Awareness Day
• Reasons why Autism Speaks does not necessarily "speak" for the majority of autistic voices
• Ways you can better support the goals of autism awareness month
• Why acceptance is more important than awareness

If you like what Neuroversity is doing, consider supporting the podcast by giving us a review on Apple or becoming a Patreon supporter.  Details on both can be found on our website at
https://www.neuroversitypod.com/resources

Links to sources cited in this episode:

UN statement on World Autism Awareness Day 2022

https://www.un.org/en/observances/autism-day/message

Moving from awareness to acceptance article by Emily Willingham

https://www.forbes.com/sites/emilywillingham/2017/04/01/no-foolin-forget-about-autism-awareness-and-lighting-up-blue/?sh=3a1308214aac 

History on Autism Awareness Month and Autism Speaks

https://www.verywellhealth.com/should-you-celebrate-autism-awareness-month-4134347

Autism Speaks Board of Directors

https://www.autismspeaks.org/board-directors

Autistic Self Advocacy Network (ASAN) link to Autism Acceptance Month:

https://autismacceptance.com

The Autism Society:

https://autismsociety.org/who-we-are/

Thinking Person’s Guide to Autism:

https://thinkingautismguide.com/

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For the first time in almost 20 years, the CDC has updated their child development milestone guidelines.  In cooperation with the American Academy of Pediatrics, a group of eight subject matter experts recommended changes to these guidelines.  So why is the American Speech Language Hearing Association and most of their 211,000 association professionals concerned?
Well curious minds, listen to find out!

Resources used for this episode:
https://www.cdc.gov/ncbddd/actearly/milestones/index.html

https://www.theinformedslp.com/review/no-sl-ps-were-in-the-room-where-it-happened

https://www.cdc.gov/ncbddd/childdevelopment/screening.html

https://www.asha.org/students/planning-your-education-in-csd/

https://leader.pubs.asha.org/do/10.1044/2022-0225-cdc-developmental-milestone-concerns/full/

https://www.asha.org/practice/Frequently-Asked-Questions-CDC-and-AAP-Developmental-Milestones/#Q2

Support the show:
https://www.patreon.com/neuroversity 

Podcast website:
https://www.neuroversitypod.com/

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So many incredible insights during this conversation with Dr. Megan Anna Neff, PsyD.

About Dr. Neff:
Dr. Megan Anna Neff has a doctorate in clinical psychology and is currently a psychology
resident in private practice where she specializes in working with neurodivergent adults and
provides neurodivergent affirming assessments. They are a parent to two neurodivergent
children and in an inter-neuro partnership.  She is a late in life diagnosed autistic-ADHDer who is passionate about educating the mental health field on non-stereotypical presentations of autism and ADHD.
Neff has co-authored two books, published in several peer-reviewed psychological journals and serves as a peer-reviewer for APA journals.  She has a passion for research and for translating research into visualizations. You can also find their work on Instagram
(@Neurodivergent_Insights) where they turn peer-reviewed academic articles into visual pixels one post at a time.

Resources cited in this episode:
Dr. Neff's work on social anxiety and autism
https://neurodivergentinsights.com/misdiagnosis-monday/social-anxiety-or-autism

Assessments available on-line
https://embrace-autism.com/

Work by Devon Price
https://devonprice.medium.com/

Female Autistic Phenotype
https://link.springer.com/article/10.1007/s40489-020-00197-9

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I’m doing a little something different this week.  Monday is the last day in February, and whether it is a 28-day February or a 29-day February, the last day is recognized world wide as Rare Disease Day, the globally-coordinated movement on rare diseases, focused on working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.  A disease is considered rare if it affects fewer than one in 2000 people.  Collectively though, there are 7,000 rare diseases that impact over 300 million people globally. 
https://www.rarediseaseday.org/

And share Neuroversity-we need you to help this little podcast that could!
https://www.neuroversitypod.com/episodes

So welcome to an encore presentation of "Introduction to PHTS."

You just never know where a slice of pizza will take you.
For me, and today's guest, it was the beginning of a beautiful friendship.
Join me as I introduce you to one of the best humans around, Carla McDonald.  This is a conversation between two moms about parenting, advocating, learning, laughing, and more.

Carla's younger son is autistic and also has PTEN Hamartoma Tumor syndrome (PHTS), which is a rare genetic condition that causes an increased risk for certain cancers, benign growths, and neurodevelopmental disorders.  As many as 20% of patients with PHTS are also autistic.  By talking about this rare genetic condition, Carla hopes to spread awareness and knowledge so that children (and adults) can get the screenings needed to help  improve their well being.

For more information about PHTS visit:
https://ptenfoundation.org/

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Another episode in the Word of the Week series!
This week?
Alexithymia
Other than waking up my smart speaker every single time I said it in this episode, what is it?  And how does it relate to neurodivergent individuals, if at all?

Resources cited this week:
Dr. Nick Walker
https://neuroqueer.com/neurodiversity-terms-and-definitions/

Examples given of Alexithymic traits
https://blogs.scientificamerican.com/mind-guest-blog/the-emotional-blindness-of-alexithymia/

Description and usage of GASF-8
https://www.spectrumnews.org/opinion/measuring-alexithymia-in-autistic-people/

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