086: Dana Kelsey on Adults w/ Autism

Uninvisible Pod with Lauren Freedman

@Autism_IRL is an Instagram account created by WEGO-award-winner Dana Kelsey, who works alongside her parents as a full-time caregiver for her autistic adult brother, Robert. Dana has a background as a behavior analyst, and has been working professionally with the autistic community for 10 years. Her passion for this line of work was sparked by a personal tragedy involving Robert’s mistreatment. In 2017, Dana made the decision to leave her professional career and move back to Central New York to assist her parents in caring for her him. Robert is 34 years old, loves Sesame Street videos, Little Debbie snack cakes, Disney movies, and pepperoni pizza. It just happens that he also lives at home with his parents. Robert has had a difficult journey since entering adulthood, but his resiliency and loving family have enabled and encouraged him to continue living a joyful life.

Tune in as Dana shares:

• how Rob was first diagnosed with autism spectrum disorder at 4 years old
• that support services when Rob was first diagnosed — in the late ‘80s — were far from comprehensive
• that her parents were lured into many biomedical therapies when Rob was a kid — none of which have been proven effective
• that so many treatments for autism focus on the condition as a defect — and that her family never subscribed to that POV
• that Rob is semi-verbal, and his family has learned his communication tools
• that at 21, Rob was involved in a traumatic assault incident that left him with PTSD— and that he and his family only began to overcome 10 years later
• that in Dana’s household, her father is the sole source of income — and that COVID has caused a lot of anxiety as a result
• the importance of maintaining your mental health as a caregiver
• how prejudice and privilege have affected Rob’s movements through the healthcare system
• that the adult services area of autism care is far from ideal
• that vaccinations and ABA are very divisive topics in the autism community

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