This is the third video in a four (4)-part video blog series by Andee Joyce. If you like this post, please leave a comment for Andee below.
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Intro to Video Blog Series
(Introduction by Johanne Regunathan, OCDD)
0:00 Welcome to the Andee Joyce video blog
0:04 Singer. Songwriter.
0:05 Musician.
0:07 Artist.
0:08 Comedian. Blogger.
0:10 Self advocate.
0:12 This is video three of a four part
0:15 video series.
Rhythm and Autism (RAA) Excerpt: One word
0:19 I was at this coffeehouse once
0:21 and some skeevy guy came up to me, and he said one word: “Autism.”
0:26 I said, “Yeah?” (audience laughs)
0:30 He said, “That’s depressing!”
0:33 I said, “Not for me it isn’t.”
They want to cure us
0:37 There is nothing funny about any of this,
0:39 but we must laugh in their faces anyway.
0:42 This video is about those of us whose mere existence
0:45 is under attack because of inaccurate and dangerous misinformation
0:49 being broadcasted by those with influence and power.
0:53 They want to cure us whether we want that or not.
0:56 (I know I don’t!),
0:58 and push us farther into the shadows-rather than highlighting our strengths.
“We” excerpt 1
1:03 (Andee clapping and singing “We”)
1:06 She loves bunnies and doom metal,
1:10 her dulcimer and her distortion pedal,
1:14 She is major,
1:16 She is minor,
1:18 you’ll be one lucky cuss if you find her…
1:23 The right angle is everything.
ALL of us have value
1:26 Now, before I get started, I want to be clear about a couple of things.
1:30 One is that if you are somebody who does need
1:33 a lot of assistance with activities of daily living and/or
1:36 someone who won’t ever write a poem or get married or go to college,
1:40 you are every bit as valuable and important as anyone else.
1:44 And yes, I mean without exception, no matter what
1:47 anyone has told you or made you believe about yourself.
Fear of evaluation is real, BUT…
1:51 Two is that I do understand why there are people
1:54 who don’t want to request accommodations for their kids, or themselves,
1:58 or even have an evaluation because they don’t want to be targets.
2:02 I take this very seriously.
2:04 I’m not writing it off as nothing.
2:07 But what I am saying is this:
2:09 They can’t just put us back in the box and pretend we never happened.
RAA Excerpt: Autism has always existed
2:13 Autism, contrary to what you might have heard, has always existed.
2:18 Things exist before they’re defined and redefined.
2:21 I’m reasonably certain subatomic particles
2:24 existed before the 19th century (audience laughs).
Autism: “official” and otherwise
2:28 According to the Journal of Autism and Developmental Disorders,
2:31 2.2% of all adults in the U.S.,
2:34 about 5.4 million of us, have an official diagnosis of autism.
2:39 And then there are those
2:40 who are not officially diagnosed, many of whom are older adults.
2:44 I got lucky.
2:46 A lot of people don’t have the luxury of an official diagnosis.
2:50 Nobody knows how many autistic adults
2:52 have self-diagnosed in adulthood.
2:56 The right angle is everything.
2:59 We don’t even know
3:01 how many people got diagnosed in childhood, but
3:03 had nothing put on their records about it because their parents didn’t want that.
3:08 Often these folks
3:09 don’t know until well into adulthood.
3:12 It boggles my mind that this would happen, but it’s not that rare.
3:16 I meet people of all these types and read their writings all the time,
3:21 and that’s not even getting into how many autistic people still don’t know.
The hidden dangers of hiding
3:26 One of my favorite stims is making things with
3:28 textured stitching, eeeee!
3:33 And in case you’re thinking that if you or your child
3:36 doesn’t get a diagnosis, that will make you or them safer.
3:40 Let me tell you this: it won’t.
3:42 Masking,
3:44 Camouflaging, passing….
3:46 That stuff kills people.
3:48 There’s a condition called “autistic burnout”
3:51 that arises as the result of having to navigate a world
3:54 that isn’t made for us for years, decades, forever.
What autistic burnout did to my scalp
3:58 You know what autistic burnout did to me, among other things?
4:02 It did this.
4:06 This is my actual scalp.
4:07 Looked like this by the time I was 35 years old,
4:11 because the stress fried my endocrine system
4:13 and made my hormones spike out of control.
4:18 I suppose some people would say that in the long run,
4:20 it turned out to be a good thing
4:21 that I lost my real hair because I found other hair to wear
4:24 that look more like who I was inside than what I could grow myself.
4:27 But I had to live long enough for that miracle to happen.
We must laugh in their faces to survive!
4:34 This is why
4:34 I say we must laugh in their faces,
4:38 as impossible as it may sound.
4:40 Our lives depend on it.
4:42 We must sing in their faces, dance in their faces,
4:45 write poetry in their faces,
4:47 be every single thing we are in their faces.
4:50 We will not live longer or better if we stay hidden.
“We” excerpt 2
4:53 He loves kittens and speed metal,
4:57 making salad from rose petals,
5:01 He is minor,
5:03 He is major,
5:04 He has lip gloss in every flavor.
5:07 Yeah…
5:08 Whatever it is they say they want to do, make them work for it as hard as possible.
Andee outro
5:14 Don’t surrender in advance.
5:18 In this video,
5:19 Andee references a condition called autistic burnout.
More About Autistic Burnout
(Johanne Reguanthan, OCDD)
5:23 What is autistic burnout?
5:26 According to a study by the Academic Autism Spectrum Partnership in Research
5:31 and Education, also known as AASPIRE, of which Andee is a co-author.
5:37 “”Autistic burnout’ is often
5:39 used by autistic adults to describe
5:42 a state of incapacitation, exhaustion, and distress
5:47 in every area of life.”
5:51 AASPIRE also notes that:
5:53 “Autistic adults describe how burnout has cost them
5:57 jobs, friends, activities, independence,
6:01 [and] mental and physical health.”
Info about AASPIRE, RAA, and OCDD
6:04 To learn more about “autistic burnout,” visit
6:07 the AASPIRE website at aaspire.org.
6:13 Thank you for watching.
6:15 To learn more about Andee,
6:17 visit her website at rhythmandautism.com.
6:23 To learn more about how to tell your story like Andee,
6:26 contact the Oregon Council on Developmental Disabilities.
6:31 You can email us
6:32 at info@ocdd.org
6:36 or call (971) 225-3659
6:42 or visit our website at ocdd.org
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