Redefining Normal

Joanne Lockwood

Tags: Inclusive society, Autism Awareness, Neurodiversity Empowerment, Redefining Normal, Parent Advocacy, Nonverbal Communication, Educational Support, Autism Journey, Community Support

Embracing Autism and Empowering Families

Crystal Jordan navigates the intricate landscape of autism advocacy, highlighting the importance of redefining normal, fostering independence, and the critical role of personalised education in empowering neurodiverse individuals.

In this episode of The Inclusion Bites Podcast, Joanne Lockwood and guest Crystal Jordan explore what it means to "redefine normal" within the context of autism and neurodiversity. Crystal, an autism advocate and author, shares her journey of turning her personal experiences into a mission for inclusion and empowerment. Joanne and Crystal delve into the challenges and triumphs of advocating for autistic individuals, especially those who are nonverbal, and discuss how societal perceptions of "normal" often fall short of embracing the individuality and potential of neurodiverse individuals.

Crystal Jordan is based in Atlanta, Georgia, and is a dedicated autism advocate, philanthropist, and author. Inspired by her son Zachariah, who was diagnosed with autism at the age of two, Crystal has devoted her life to creating a world where neurodiversity is embraced. She founded Zachariah's World, a brand that focuses on autism awareness and inclusion through books, apparel, and advocacy. Joanne and Crystal discuss how Crystal's advocacy journey began and the importance of creating environments where autistic individuals can thrive. Crystal's work is driven by her desire to ensure that her son and others like him can lead fulfilling lives with access to education, employment, and societal acceptance.

Throughout the episode, Joanne and Crystal tackle issues such as the importance of individualized education plans (IEPs), the role of advocacy in securing necessary services, and the need for more resources and support for autistic individuals and their families. They also highlight the everyday challenges and rewards of raising an autistic child, including finding joy in small milestones and fostering independence. Crystal shares humorous and heartwarming stories about her son Zachariah, shedding light on his unique personality and the ways he navigates the world.

A key takeaway from this episode is the critical role of advocacy in creating inclusive environments for neurodiverse individuals. Listeners will gain a deeper understanding of the challenges faced by autistic individuals and their families and the importance of pushing for systemic changes that promote acceptance and inclusion. Crystal's story is a powerful reminder that everyone deserves the opportunity to thrive, regardless of their neurodiversity. The episode encourages listeners to become allies and actively support the cause of inclusion through understanding, patience, and advocacy.

Published: 13.03.2025

Recorded: 21.01.2025 Episode Length

Duration: 0:56:27

Shownotes:

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Clips and Quoates

The Importance of Advocacy in Elder Care: “You have to be brutally firm with people in order to get not not rude, but just really, really firm.”
— Crystal Jordan [00:17:15 → 00:17:22]

Caring for an Adult Child with Down Syndrome: “They’re very aware of the fact they won’t be able to go on providing care and advocacy for their son for the rest of their lives.”
— Crystal Jordan [00:27:26 → 00:27:34]

Viral Topic: The Crisis Facing Adults with Down Syndrome: “What’s happening now is because of the health care advances, people with, downs are now living longer and potentially most of them are now outliving their parents. So we’ve got a crisis with the with people with downs where they will not be able to see that they haven’t got independent living or they’re not independently capable of living.”
— Crystal Jordan [00:27:52 → 00:28:08]

Supporting Nonverbal Autistic Adults: “What I don’t see is adult autistic people being advocated for on television nationally. I don’t see the awareness of nonverbal autistic people in their twenties, thirties, and forties and how we support them.”
— Crystal Jordan [00:28:54 → 00:29:05]

The Importance of Empathy in Advocacy: “We haven’t created, I would call it, an empathy bridge. We haven’t got people to connect in an empathetic way to the the problems so that they become bought into providing the solution.”
— Crystal Jordan [00:29:47 → 00:29:57]

Parental Pride: “There’s nothing prouder than to see our 2 children go to university, grow up, get married, have their own house, property.”
— Crystal Jordan [00:31:28 → 00:31:35]

Balancing the Needs of Siblings: “It must be must be hard to ensure that your typical child doesn’t feel pushed out or marginalised from their atypical child with autism, where you’re putting all your all your time into that one child.”
— Crystal Jordan [00:38:12 → 00:38:17]

Embracing Neurodiversity in Education: “The individualized education programme allows us to create something just for Zach or just for another autistic child, not treat them like everybody else because… neurodiversity… are so individual.”
— Crystal Jordan [00:41:09 → 00:41:18]

Understanding Dyslexia: “When we finally had this diagnosis for, dyslexia, we suddenly understood why he’s not able to recognize letters and shapes and things.”
— Crystal Jordan [00:46:49 → 00:46:57]

Overcoming Ignorance Together
Quote: “We all live in our own little echo chamber. We all blinkers on. We hear what we know. Anything outside of that, we tend to be blissfully unaware of.”
— Crystal Jordan [00:52:14 → 00:52:44]

Definition of Terms Used

Neurodiversity

Definition: Neurodiversity refers to the concept that variations in brain function and behavioural traits are normal and part of the natural diversity of the human population.
Relevance: Embracing neurodiversity promotes inclusiveness for individuals with neurological differences, such as autism and ADHD, acknowledging their unique perspectives and contributions.
Examples: Recognising autistic individuals for their unique skills, incorporating neurodiverse hiring practices, and adapting workplace environments to accommodate different neurological needs.
Related Terms: Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), Inclusion, Neurodivergent
Common Misconceptions: Neurodiversity is sometimes misunderstood as a medical condition that needs curing, rather than a natural variation in human cognition and functioning.

Individualized Education Program (IEP)

Definition: An Individualized Education Program (IEP) is a custom-tailored educational plan designed to meet the unique needs of a student with disabilities.
Relevance: The IEP is crucial in providing the required support and resources that help neurodiverse students achieve their academic potential and equitable access to education.
Examples: Specialised instructional strategies, speech therapy, occupational therapy, and specific educational goals tailored to the student’s needs.
Related Terms: Special Education, 504 Plan, Educational Accommodations, Learning Disabilities
Common Misconceptions: Many believe that an IEP lowers academic standards, but it is actually a means to personalise learning in a way that allows students to meet educational objectives according to their capabilities.

Advocacy

Definition: Advocacy involves the act of speaking or acting on behalf of someone or a cause, particularly to influence policies, decisions, and the allocation of resources.
Relevance: Advocacy is vital in securing the necessary supports and accommodations for neurodiverse individuals, ensuring they are treated with respect and have equal opportunities.
Examples: Parents advocating for their child’s educational needs through an IEP, lobbying for disability rights, and public campaigns to raise awareness about autism.
Related Terms: Activism, Support Networks, Legal Advocacy, Self-Advocacy
Common Misconceptions: Advocacy is often misunderstood as aggressive confrontation when it also includes peaceful and strategic efforts to create positive change.

Nonverbal Autism

Definition: Nonverbal autism is a type of autism spectrum disorder where individuals do not use spoken language effectively, relying instead on alternative communication methods.
Relevance: Understanding nonverbal autism is crucial for developing effective communication strategies and supports to help these individuals express themselves and interact with others.
Examples: Using sign language, picture exchange communication systems (PECS), and electronic communication devices.
Related Terms: Augmentative and Alternative Communication (AAC), Autism Spectrum Disorder (ASD), Speech-Language Pathology, Communication
Common Misconceptions: A common misconception is that nonverbal individuals cannot understand speech or communicate effectively, but many are capable of understanding and using alternative methods to convey their thoughts.

Stimming

Definition: Stimming, or self-stimulatory behaviour, involves repetitive actions or movements often seen as a way for neurodiverse individuals to self-regulate emotions and sensory input.
Relevance: Recognising stimming behaviours is essential for providing an inclusive environment that understands and supports the sensory needs of neurodiverse individuals.
Examples: Hand-flapping, rocking, repeating sounds or words, and tapping objects.
Related Terms: Sensory Processing Disorder, Self-Regulation, Repetitive Behaviours, Coping Mechanisms
Common Misconceptions: Many perceive stimming as merely disruptive or unnecessary, while in reality, it is often a crucial means of self-soothing and managing anxiety.