066: Life on the Autism Spectrum with Rebranding Autism’s Jen Msumba

Mar 18, 2020

If Jen Msumba of Rebranding Autism isn’t a staple on your social media feed, then take our advice and get her good vibes on your radar. Jen lives on the autism spectrum, and has been through hell and back in her journey to comprehensive care and self-realization. Much of her success has been in facing personal challenges, and seeking the joy in all things to live a full and varied life. An accomplished musician, she has risen to prominence in the patient leadership community through her YouTube channel, where she posts videos of herself playing piano versions of pop music. As her confidence has grown, she has become more outspoken about her daily struggles, and works to inspire others to increase their confidence, get out of their comfort zones, and try new things — something that can be a real challenge for many on the spectrum. Living in residential schools and state hospitals from the age of 15, she survived abusive situations (she readily advocates against electric skin shock, a therapy used to punish adverse behaviors, which she endured daily for 7+ years), and has worked to successfully curb her own self-harming, impulsive, and aggressive behaviors in a healthy way. She now lives in a caring, largely independent-living facility, where she is happy, healthy, and in control of her own destiny. It has been hard won, but worth the fight…and she’s here to serve not only the autism community, but also those looking in from the outside. Team UP: meet Jen. She’s as bright a light as there is, and she deserves our attention.

Tune in as Jen shares…

• that she’s been in hospital and residential school care since she was 15, and wasn’t aware when she was first diagnosed with autism spectrum disorder (ASD)
• that for a long time, doctors and caregivers didn’t inform her about her diagnosis and treatment because they incorrectly assumed she wouldn’t understand
• that she didn’t become aware of her diagnosis until she was a young adult, and this realization was a relief because it validated her, explaining so many of her own behaviors and allowing her to release judgment and self-criticism
• what her early emotional reactions looked like — including self-harming reactionary behaviors
• that she originally thought all people on the autism spectrum were nonverbal
• how awareness (via diagnosis and proper care) has improved her confidence and self-esteem — and allowed her to be herself
• that she responds well to routine, and works to challenge herself to change things up (and share with others how she feels, and that her feelings are valid and relatable!)
• prejudice she’s experienced in the medical system: doctors often addressing her carers and not her directly — without first consulting on address
• that her YouTube channel started with her posting piano videos — and grew from there
• a description of some of the darker moments in her treatment — in state hospitals and psychiatric facilities, where electric skin shock was used for behavior modification
• that until recently, she continued to have nightmares about her violent past
• the role her faith plays in her healing
• the sage advice her mom gave her that changed her life