Interviewees Wanted: Autism Spectrum Disorders

MadAlice

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Due to some encouraging words from some folks here and several folks in my life, I have decided to make this project happen. I am collecting stories and interviews from people on the autism spectrum and their loved ones and caregivers.

Here is the basic idea: The working title is What We Can't Tell You: About Autism. As almost anyone can tell you, the movement for autism awareness is going strong. There are plenty of books and stories published about "overcoming" autism and plenty of information about the symptoms of autism spectrum disorders. There are not enough stories of what living with autism and loving someone with autism is like. So I'm creating a collection of just that. Think Chicken Soup for the Soul but not just uplifting anecdotes. I'm talking real, honest, no-holds-barred stories. The ones you don't feel like you can tell anyone. The good, bad, ugly, embarrassing, and the funny. The things you cry alone in the shower about. All names will be changed, but stories will be real.

Specifics: I'm looking here first for contributors and interviewees. I want to know whatever you want to say. Below is the information in the flyer I'll be handing out next week at an annual autism walk in my city. If you get stuck on what to talk about, those questions are just an idea of the sort of thing I'm looking for. If you'd like to participate, you can send me a PM here, and I'd like to email a short questionnaire and consent form to you, then have you just email me back with your story or answers to some of the below questions. You can say as little or as much as you'd like.

Here is the information in the flyer:
Calling All ASD (or similar) Persons, Parents, Caregivers, Family Members
I want to share awareness of what autism really is—beyond the statistics, beyond the symptoms listed in the DSM, beyond what the doctors and therapists say! I need your help sharing the stories from the inside—the stories no one hears about living with autism—the good, the bad, the hilarious, the uplifting, and the ugly.
Who am I?
I am a mom of a teenage boy on the autism spectrum. I’m not a professional in the field; I only have my own experiences. I want to make spreading awareness of autism more than sharing statistics or symptom lists. Those things are important, but people need to hear more real stories from the people involved.
What am I doing here?
I am seeking a collection of stories and interviews from real people, sharing real information that most people never get to see. Any information provided will be confidential (names of people and places will be changed.) in order to encourage sharing of honest information to provide the public with in-depth tales.
Who do I want to hear from?
• Children/teens(with parents’ permission)/adults on the spectrum-- In your own words: What has your experience been like? What do you want people to know? How do you feel about your diagnosis? How do other people treat you? What makes things harder or easier? What’s the worst thing about being on the autism spectrum? What good things have happened?
• Parents of those on the spectrum!—How do you feel about autism? Tell me anything about your journey, from first noticing symptoms to getting a diagnosis, experience with the school system and professionals. Also—tell me about the good times, but the hard times too. What would you change? Are there any times you felt like you just could not handle things anymore? Why, what happened? What do you really want people to know that you can’t share with anyone else? If you’re a single parent—how have you handled dating?
• Other family—grandparents, siblings, caregivers, teachers, therapists, step parents, friends—what’s it like for you, really? What have you learned? What do you wish was different? What was hard for you?

Other information:
• To participate, send an email to *removed for forum post* with Subject line: “Autism questionnaire.” I will respond with a short survey and we can decide on a method of interview (in-person/email/you sending me a written or spoken story)
• A signed release will be required, which basically says that you agree to confidential publishing of any and all parts of your or your child’s interview/story and no compensation is promised.
 

cmhbob

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Can I share this beyond AW, like on Facebook or Twitter? That might make it problematic for people contact you though. Can you share the flyer on FB or Twitter? Or email it to me?
 

MadAlice

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Bob, Thanks for your offer! I will be ready in a few days to share this outside of AW. I will definitely take you up on it then! I'll send you a PM when I'm ready.
 

Snitchcat

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Please send me a PM about FB sharing, too? I have a few friends who might be interested. Thank-ee!
 

Troyen

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I have two nephews with autism. I don't think I am around them enough to be effective in what you are looking for, but I love your idea. I know my sister deals with a lot. One of her boys is severely autistic (12 years old, doesn't talk, isn't potty trained, and physically abuses himself when he is upset), and it is not an easy thing to handle. If you would like, I could ask her if she would be interested in sharing a story or two. If you would like that, send me a pm.