I'm in charge of my library's Autism Acceptance Display

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Long-time reader/sometimes poster here, I have to change up my log-in info frequently because it decides that I haven't logged in enough and requires me to create a new identity. ANYWAY.

My name is Lauren, I am autistic, and I work for the public library down in south Louisiana. We all have our own special jobs there, in addition to the regular library technician work we all do--mine happens to be displays. This month, it's Autism Acceptance Month. There are going to be the standard books and maybe movies (Please Stand By is up there, I liked that one, but I'm super picky, as you might imagine)

But what really goes at my branch is literature. Handouts. Quick-reads. Academic articles. I would like to create some and so I have a question: what do you, my lovely autistic community, want other people to know? I have some ideas for what I would like to create; despite the haphazard way in which this is written (I'm trying to move quickly, I'm at work), I am an effective writer. Do you have personal stories you'd like to share? Is there information on vocabulary that people get wrong, what do you prefer? What do you think about media depictions of ASD individuals? Etc.

Check out this thread: You May Be Autistic If...

You may have to wade through a lot of nonsense and off-topic comments, but if you select about 50 or so statements beginning with "You May Be Autistic If...", you might have enough to add some personal insights to your display. Examples:

You May Be Autistic If...

... a party to which you have been invited gets canceled, and you feel nothing but relief.

... being "stuck between handicapped and unremarkable" is how you define your life.

... being "stuck on the outside looking in" is how you define your perspective.

... every table in the break room has someone sitting at it, so you go back to work instead of sitting with someone else.

... getting lost in a forest was one of the most wonderful experiences of your life, and you felt sad and angry when they found you and took you home.

... it is easier for you to be accurate than it is for you to be simple.

... people ask why you enjoy working in the dark as if there was something strange about it.

... someone takes it as a personal insult when you ask them to not touch you again.

... someone uses the word 'Autistic' as a synonym for 'ignorant' or 'imbecilic', and you call them out and lecture them on why their misuse of the word is so demeaning.

... the alphabet that you invented in the fifth grade includes a unique character for each of the 45 phonemes that you recognize.

Enjoy!

Thank you. I'm also taking book recommendations.

Welcome back to wrong planet

Books
Neurotribes: The Legacy of Autism and the Future of Neurodiversity Paperback by Steve Silberman
In a Different Key: The Story of Autism by John Donvan and Carol Zucker
The Complete Guide To Asperger's Syndrome by Tony Attwood
Look Me In The Eye and Be Different by John Elder Robinson
Autism in Heels - by Jennifer Cook O'Toole

'Please Stand By' is by far my favorite movie and media depiction of Autism.

I recommend these books:

Jeannie Davide-Rivera - Twirling Naked in the Street and No One Noticed: Growing Up with Undiagnosed Autism

Sarah Hendrickx - Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age

Barb Cook and Dr Michelle Garnett (editors) - Spectrum Women: Walking to the Beat of Autism

Emma Goodall and Yenn Purkis - Women on the Spectrum: A Handbook for Life

Lisa Morgan and Mary Donahue - Living with PTSD on the Autism Spectrum: Insightful Analysis with Practical Applications


... these websites:

https://www.spectrumwomen.com/

https://the-art-of-autism.com/females-a ... checklist/


... and these articles:

"I Thought I Was Lazy: The Invisible Struggle for Autistic Women":
https://theestablishment.co/i-thought-i ... Z2Z8_OY3lQ

"An Autistic Burnout":
https://theautisticadvocate.com/2018/05 ... c-burnout/

"Autistic Burnout: The Cost of Masking and Passing":
https://boren.blog/2017/01/26/autistic- ... d-passing/

"At the Intersection of Autism and Trauma":
https://www.spectrumnews.org/features/d ... sm-trauma/

"Autism is seen as a male thing, but girls just implode emotionally":
https://www.theguardian.com/education/2 ... arm-school

"Sensory Integration in Autism Spectrum Disorders":
https://www.autism.org/sensory-integration/

"Mental Health and Autism: Why Acceptance Matters":
http://www.thinkingautismguide.com/2018 ... tance.html


I'll answer your specific questions shortly.

My bride got us a copy of The New York Times' Understanding Autism. I haven't finished reading it, yet, but so far I find it quite interesting.

I'm up at the Asperger's part of the Autism Spectrum and, for me, I consider it a difference, not a disability, and--so far--the magazine seems to lean toward a medical viewpoint that I am uncomfortable with for me and other "It's a difference!" folk. (I understand that if you've met one Autie you've met one Autie and others have a different experience with Autism than I have.)

But, it seems--overall--to be a good magazine. It might be relevant for what you are doing.

I worked as a library tech one summer, when I was 20.

That's great about your display.

Personal Stories:
I have the same story as many late-diagnosed people here. I've seen psychiatrists and psychologists since the 1990s, and I was rightfully diagnosed with mutism, depression, anxiety, and agoraphobia. All good. There was still something missing. I couldn't articulate why I was so different all my life because I didn't have the right vocabulary. I had no idea my plethora of sensory issues had anything to do with my social challenges, or that my repetitive behaviours and routines had anything to do with shutdowns, meltdowns, echolalia, face blindness, or my 24/7 stimming. I didn't know I was supposed to connect any of those dots. My professional training about autism didn't reflect me. It was all about little boys and trains - the stereotypes. Then I had a catastrophic decade of trauma and started working with trauma psychologists and psychiatrists. Again nothing. They focussed on my trauma only, as if I had been born with it (which I hadn't been). Then I also had a stroke which required a year of rehab. Those doctors attributed everything to stroke. Each doctor only saw through their own lens. I suffered more and more.

Long story short but I figured it out myself in 2017, with my daughter saying "You know you're autistic, right?!" She thought I knew I was autistic but had never mentioned it to her (lol). I referred myself to a private assessment centre after googling about sensory issues and finding Wrong Planet. I wrote a 188 page cross-referenced, developmental history (I had A LOT to say!), and went for assessment on 11 April, 2018. Hey it's almost my anniversary I guess! In May, a month prior to my 50th birthday, I was formally diagnosed with Moderate or Level 2 Autism requiring substantial support, and my co-morbid conditions were reaffirmed including Alexithymia. I was referred to OT, who then diagnosed Sensory Processing Disorder. Last year I also went for ADHD testing and after 20 hours of psychometry, I was diagnosed with combined-type ADHD which had also been missed all those years. The neuropsychiatrist said my school records are "classic" in terms of evidence, so it's frustrating that I was missed and ignored all these years for both conditions. It's been a rough road. I still feel grateful for what I've learned about myself since 2017, but it's a shame my daughter was the only person who suggested Autism. My daughter has since been identified on the spectrum as well, at Level 1. My advice to women / adults who are curious, is to do as much reading as you can. Don't let doctors take you off guard. Have all your evidence sorted and documented, along with research information if you think your doctor is untrained in this area or won't send you for referral. I didn't bother with a referral for myself. I went straight to my University's Neuropsych department and asked for help. That's how I found my diagnostician. It was about a five month wait for me.

Vocabulary:
I strongly prefer autistic person, or identity-first language. I wish the media would listen to us about this, just like they listen to LGBTQ individuals who request the use of particular pronouns. Their wishes are taken seriously (for the most part it seems?), and there is a public awareness / acceptance of gender expression, but autistic voices seem to be ignored regarding their chosen identifiers. Even President Biden's speech for Autism Day said "person with autism" repeatedly. It was a glaring mistake, in my eyes. Stats show an overwhelming number of autistic people prefer identity-first language.

I also dislike being called an "Aspie". That's such a cheeky term but besides, I don't have Aspergers. I'm autistic. Likewise, I don't like when people / doctors assume I must be "High Functioning" until I tell them otherwise. I'm not High Functioning. I have extreme challenges in all parts of my diagnosis. The fact that I can walk and talk shouldn't allow people to pigeonhole others, or dismiss the reality of their needs. I have a 30 page report stating that I require substantial support, whether I receive it or not. I guess the third thing that bothers me is the phrase "Autism Parent". No one parents autism. They parent autistic children. I'm autistic so that makes me an "autistic parent", but my child is also autistic, and I'm a single parent doing this on my own for 24 years. There are very few resources for autistic parents regarding parenting, whether the children are NT or ND. I would love to see the term "Autism Parent" abolished because it doesn't make sense to me. Either you are an "Autistic Parent" or you or a "Parent of an Autistic Child", or you are sometimes both.

Media:
I don't watch much TV or movies. I can't focus or recognise characters from scene to scene. But, I've seen Parenthood and Atypical. I think they both did a good job of highlighting an autistic character, even though not all autistic people have the same characteristics. I've never seen Big Bang or Good Doctor, and I have no interest in them. There was an autistic doctor on Grey's Anatomy for a season. I can't remember her name. I think she was a good character too, although we didn't get to know her inner life very much within the storyline. They focussed on her anxiety, and awkward prosody.