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What's Your Story?

Indiana Disability History Project

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Indiana Disability History Project

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Irene and Brenda

photo of Irene and Brenda

Picturing My World

Don Robinson's Story

photo of Don and his cat

Kentucky Childhood

Granddad Stinson and Grandma Stinson

photo of Granddad Stinson and Grandma Stinson

My First Permanent

1930's Perm Machine

photo of 1930's Perm Machine

The Struggles of Going Undiagnosed Until Adulthood

Jul 10th, 2014 by admin | 0

photo of interviewee Andee Joyce

It wasn’t until Andee was 44 years old that she was diagnosed with an autism spectrum disorder. She shares her experiences with growing up without a diagnosis and how it affected her life.

In this video interview, Andee explains why it is that adults her age might have no idea they have austism spectrum disorder. “We can go overlooked because by the time we’re in our 30s or 40s we’ve learned a lot of masking skills.” No amount of effort was enough to overcome the challenges she faced when she had no clue to their origin. “It’s like I just tried, and tried, and tried, and tried so hard, you know, to make people like me.” She shares the great relief she’s experienced, gaining the insights provided by her diagnosis. “It was like somebody turned on the light and I just went oh, that’s what this is, that’s why I react this way. This is why other people react this way to me.”

Perceiving and accepting her differences have been the key to improving the way she communicates and interacts with others. “It’s like I really need things spelled out for me in a way that I know a lot of people would find kind of tedious. But you know, if I need it, I need it.”

Andee regrets not having this self-knowledge earlier. She has battled depression over what it means to have autism spectrum disorder without the benefit of a diagnosis in childhood. “I’ll never have a chance to be young and carefree and understanding of myself, you know, build a real life for myself and a nest egg, all those kind of things.” “There are a lot of talents that are going to waste because people don’t have the social skills to put them across to people, to sell them.”

This video was recorded at the 2011 Autism Now Midwest Regional Summit in Indianapolis, and is hosted on the CAC Voices YouTube channel from the Center on Aging and Community at the Indiana Institute on Disability and Community. All CAC Voices videos are captioned: click on the “CC” icon at the bottom of the video to turn captions on or off.

Watch “The Struggles of Going Undiagnosed Until Adulthood” >


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