Fecal smearing and anal digging are two of the most distressing behaviors seen in autism. In this episode, we speak with Dr Joyce Tu, Ed.D., BCBA-D, and Kelly Bermingham, BCBA, of Easter Seals Southern California, both of whom have extensive experience working with children and adults with severe autism, and feces-oriented behaviors. With host Jill Escher they discuss toilet training techniques, the role of functional behavior analysis, encopresis, stopgap measures, and insurance coverage for medically necessary interventions.

Links:

Dr Tu at Easter Seals: https://www.easterseals.com/southerncal/our-programs/research-division/verbal-behavior-lab.html

Toilet Training Course: https://www.citepro.com/courses/toilet-training

Drowning is the leading cause of death in children with autism under age 14. Shirley Fett and Tammy Anderson are working to change that. Shirley, an executive board member of Autism Society San Diego, helped pioneer pool events and lessons in her community after looking for help with her two sons with autism, who are now 29 and 31. Tammy Anderson, the CEO of AquaPros Swim School, San Diego, has been pioneering swim programs for the autism community for more than 20 years, and trains teachers around the country.

The National Autism Association is a leader in helping families and communities prevent autism emergencies, particularly when it comes to the prevalent and often-lethal phenomenon of elopement. NAA President Wendy Fournier and Co-founder Lori McIlwain join NCSA's Jill Escher discussing NAA's efforts to address this national crisis, sharing their research efforts and shocking statistics, and offering advice for families. They also discuss the cruel trend of parent-blaming. Roughly half, or 48%, of children with an ASD attempt to elope from a safe environment. The vast majority of elopement-related deaths are by drowning.

Links:

https://nationalautismassociation.org

Kate Movius move to Hollywood to pursue an acting career but then her firstborn son, Aidan, was diagnosed with severe autism. Kate’s life became overwhelmed by lack of sleep and her son’s frequent, and horribly dangerous, elopement even after her house was reinforced “like Fort Knox.” Kate then devoted herself to advancing first responder training by founding Autism Interaction Solutions, dedicated to “Providing effective education in autism identification, safety and communication tactics and improving safety for adults and children at risk of eloping.” She is also an advisor to LA Found, a Los Angeles County program that helps caregivers of those living with Alzheimer’s, dementia, autism or other cognitive impairments.

Links: Autism Interaction Solutions

LA Found

This month, September 2022, we honor the second year of the September 26th Project — the annual emergency preparedness reminder for autism and special needs families created in memory of Feda Almaliti and her son Mu — with a series of podcasts about safety, first responders, and preparing for emergencies. Our first guest is someone who was a great friend to Feda and is herself a superstar in the Bay Area autism community, Mizpah Brown-Rich. Mizpah is the founder of Joshua’s Gift, a nonprofit that creates events for autism families, does first responder training, promotes autism awareness and much more.

Links: Joshua’s Gift

The internet sees rampant bullying of autism parents but Tom McKean is calling BS. Diagnosed with autism in his teens, Tom, now in his mid-50s, became one of autism’s very earliest self-advocates, along with Temple Grandin and a few others. Grounded in his desire to help those less fortunate than himself, he now writes and blogs about autism and its bizarre culture wars. Highlights:

• His (bitter) experience being institutionalized in his late teens

• His unexpected journey toward becoming an autism advocate

• He has decades of witnessing parents’ sacrifice and love for their children, but some of the newer and more vitriolic advocates are ignorant of the broader world of autism

• Interviewer Jill Escher has been chatting with Tom about guitar for several months, and the two perform an impromptu and fairly ear-offending duet!

Links:

Tom McKean on Facebook here: https://www.facebook.com/thomasamckean

Blogpost about the autism puzzle piece logo: The Autism Puzzle Piece Logo: What It Really Means

Knowledge is power! And Michigan-based Jill Barker, mother of two men with developmental disabilities, ages 45 and 37, wants you to know the latest about federal and state DD policy. Jill publishes The DD News Blog, https://theddnewsblog.blogspot.com/, which provides “News, information, and commentary for families and friends of people with developmental disabilities.” Highlights:

• Lies that parents are told

• Attacks on guardianship

• The de-funding of vital programs for adults with DD

• The importance of advocacy at a time of ideology

Michelle McFarland McDaniels is a dynamo mom from the south side of Chicago who sees a terribly bleak landscape when it comes to programs for young adults like her 25 year-old daughter with severe autism. But her optimism about the future has pushed her to create a new nonprofit THRIVE! Enrichment Services, which hopes to offer an array of services in her area.

Highlights:

• Her beloved daughter's severe autism, and sometimes unpredictable behaviors. The lack of services available for adults with challenging behaviors.

• How she hired a security guard to escort her daughter to a dentist appointment two miles away, concerned about police response to behaviors, and also carjackings!

• Her vision for THRIVE! Enrichment Services, including behavioral therapy and hopefully someday a physical center where programs can be provided.

• Mission: "Our mission is to help individuals who have autism or I/DD with comorbid challenging behaviors lead productive, meaningful and fulfilling lives."

• A vision for services that are truly person-centered and based on the interests and skills of each individual.

• Slogging through the process of getting a program approved and funded

Links:

Video: https://www.youtube.com/watch?v=HZHNplt2vxU&t=14s

Jess Ronne, mother of 8, including a teen son with autism and other neurodevelopmental disorders, is the main protagonist of a new documentary film, Unseen: How We're Failing Parent Caregivers. Jill Escher talks with her about the genesis of the film, its goals and reaching new audiences with her important message. Highlights:

• As the title suggests, these stories of extreme caregiving tend to be hidden from the public eye. The film gives these families a voice and tells their stories.

• While the film reveals a certain amount about their son Lucas, it does not portray the most harrowing aspects of his disability.

• Jess wants community members and churches to become more supportive of families living with children and adults with extreme special needs.

• Caregivers are in desperate need for more support at home and also day and residential programs.

• It’s okay for caregivers to say, “I don’t want to do this for the rest of my life.”

Links:

Home of Unseen: Caregiverdoc.com

Unseen trailer here

The Lucas Project here

Lucy Kross Wallace is an accomplished writer and sophomore at Stanford University who has written about her disenchantment with the neurodiversity movement.

In conversation with Jill Escher, Lucy tells about how she was diagnosed with Level 1 autism at age 18, after years of severe mental illness and failed treatment (she prefers the term Asperger Syndrome). She found autism a useful framework to help her understand herself and enable her to exit the hospital and enroll in college, and the first year at Stanford she found camaraderie and meaning in the neurodiversity movement. The neurodiversity crowd featured much black-and-white thinking but it felt good to her to be crusading against the ableism of the world. She explains how neurodiversity is part of a larger critical social justice movement, but found it was not aimed at “justice” as she understood it. Lucy felt her life on Tumblr was a bit of a performance but she is no longer on social media, she considers it a mental health risk.

Lucy thinks the diagnostic scheme for autism does not reflect actual functional realities, and asks what is the unifying factor for autism? “We need multiple labels, it’s hard to talk about when ‘autism’ means so many things.” They discuss the postmodern roots of the idea that language constructs reality, a driving force behind neurodiversity tropes, and the bullying of parents by online activists.

Links:

NCSA: The cognitive distortions that feed neurodiversity radicalism

Quillette: My brief spell as an activist