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When Autistic People Have Epilepsy

Photo © Ivo Dimitrov | Flickr / Creative Commons [image: Illustration of a human brain, in profile, made of colorful cogs in various sizes and shapes.] Maxfield Sparrow unstrangemind.com [Content note: This post discusses suicidality, mental health, and death.] In the early 1990s, I was engaged to a man with epilepsy. He had tonic-clonic seizures and he was a big guy, so I was always alert to the possibility of an episode. I knew there were stores we couldn’t shop in, and roads I couldn’t drive down. I caught his body and lowered him safely to the ground more times than I can remember. I guarded him from the pressing crowd of curious onlookers when he came around after a public seizure. And I worried, feeling helpless, when his medication levels were off, and he had seizure after seizure. I can’t know what it is like to have epilepsy or…

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Autism Uncensored: A Dangerous and Spirit-Crushing Book

Photo © Charley Lhasa | Flickr/Creative Commons [image: Plush red Elmo doll lying on asphalt. A yellow chalk speech bubble has Elmo appear to be yelling “Help!”] Maxfield Sparrow unstrangemind.com [Content note: Extensive discussion of restraints. Discussions of gaslighting, denying Autistic autonomy and competence, child abuse, autism profiteering, and similar goblins. Discussion of the 1960s medical view of autism as it continues to occur today.] You may have seen the recent Washington Post article titled “Bystanders were horrified. But my son has autism and I was desperate,” an excerpt from Whitney Ellenby’s new book, Autism Uncensored: Pulling Back the Curtain. True to the exposé tone of the title, Ellenby describes in livid detail the day she wrestled her panicked son, Zack, by clamping his 50 pound frame tightly between her thighs and locking her feet together. The two spent over half an hour in combat as Ellenby dragged him inch…

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Why Is the Autistic Unemployment Rate So High?

Photo © Terry Chay | Flickr/Creative Commons [image: A colorful office workstation with two large computer monitors.] Maxfield Sparrow unstrangemind.com In the United States, thirty-five percent of Autistic eighteen-year-olds go to college. Of those American Autistics with university diplomas, only 15 percent are employed. This 85 percent unemployment rate (among college-educated Autistic adults) is massive—the general population’s unemployment rate (at all education levels) is only 4.5 percent. There are some obvious reasons for this disparity. Just as with all Disabled people, workplace understanding and accommodations are a huge reason why Autistic people have such a hard time finding and keeping employment. Making it past an interview can be an insurmountable hurdle for many of us. While organizations and employer programs are popping up to help Autistic adults find and keep employment, with an estimated 50,000 new Autists entering the workplace every year, the few programs that exist cannot possibly keep…

Please Stand By is a Quietly Subversive Film

Maxfield Sparrow unstrangemind.com Me too. Which is why I can’t wait until Hollywood starts getting that stuff right so I *can* just relax and enjoy a film about people like me. #PleaseStandBy — Unstrange Mind 🖖🏼 (@UnstrangeMind) January 28, 2018 [image: Twitter exchange: “I want to see Please Stand By but as one on the spectrum I don’t want to be hung up on the attention to detail and accuracy of the portrayal at the expense of actually enjoying the movie.” -@GlennHampson “Me too. Which is why I can’t wait until Hollywood starts getting that stuff right so I *can* just relax  and enjoy a film about people like me.” – @UnstrangeMind] That Twitter exchange sums up how I feel when I watch fictional movies that feature Autistic characters, like the recent release Please Stand By. I want to just sit back and let the experience carry me away to fantasy…

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Authoring Our Own Lives: How Autistics and the World Benefit from Auti-Biography

Maxfield Sparrow unstrangemind.com Photo © barbara w | Flickr/Creative Commons [image: Hands on a typewriter keyboard, at a sunny wooden desk, next to a drink on a crocheted white doily, amidst some plucked green leaves.] The last decade has seen a blossoming of blogs, articles, books, and documentary films about autism, authored by actually Autistic people. This is an exciting time of growth for Autist-created content about autism, and I want to encourage all Autistic people to document their lives: whether in a private journal, or to share with the public. There are great personal and community benefits that come from Autistic people writing about our lives—especially when we write about emotions, victories, and challenges and not just the factual events by themselves, although any autobiographical writing is helpful to the writer as well as to others if they decide to share what they’ve written. Michel Foucault, the postmodern philosopher,…

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Why To Siri With Love Is a Wrecking Ball of a Book

Maxfield Sparrow unstrangemind.com [Content note: possible triggers include: forcible sterilization of minorities including Autistic people, forcible gynecological experimentation on minorities, Judge Rotenberg Center, electric shock, stereotypes about Autistics lacking empathy or a sense of humor, stereotypes about Autistics or Black people lacking the ability to feel pain, snakes and feeding live rodents, harmful Supreme Court verdicts, dehumanizing of Autists, getting drunk, preferring drunkenness to talking with Autistic children, humanizing the author of a grossly dehumanizing book.] Come mothers and fathers / Throughout the land  And don’t criticize / What you can’t understand  Your sons and your daughters / Are beyond your command  Your old road is rapidly aging.  Please get out of the new one / If you can’t lend your hand  For the times they are a-changin’.  -Bob Dylan [image: Book cover: A blue background with informal font white text reading, “To Siri With Love,” with a photo of a…

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Coping with a Crisis When You Have Unreliable or Intermittent Speech

Maxfield Sparrow Unstrangemind.com Photo © Marcia Furman | Flickr/Creative Commons [image: White person with tousled medium brown hair slumped over at a restaurant table, face hidden, with sunglasses resting on the top of their head and hair.] Autistic people already know how alarming and overwhelming a crisis can be. But when we have unreliable and intermittent speech, a crisis can go beyond stressful, even becoming deadly. I’d like to share a few tips on how I’ve managed to stay alive despite intermittent speech. Sections: What is unreliable and intermittent speech? People With unreliable and intermittent speech can help others in emergencies What to do when you are in a crisis and need to contact someone  Text someone you know or a professional helper Use TTY/Relay to contact someone Use an AAC over the telephone Use the Text Crisis Line How to interact with others during a crisis Decide whether and…

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Labels Are Valuable Tools

Maxfield Sparrow unstrangemind.com There’s something that kind-hearted and well-meaning people say that can hurt. And it usually goes like this: “Let’s go around the circle and introduce ourselves.” “Hi, my name is Max. I’m a writer, artist, musician, and public speaker. I live in a van with my cat, Fermat, and I am Autistic.” “Oh, Max, I don’t think you should call yourself autistic. Labels are for soup cans, not people! You’re such a sweet, intelligent man. You don’t need to use that label on yourself any more. We all accept you here. You’re just like us and seem totally normal to us. Don’t label yourself.” [Image description: A bowl of alphabet soup with the word “Autistic” made of alphabet noodles floating in it.] The person who says “Don’t label yourself“ is trying to be progressive and enlightened and kind and accepting. It is so hard to tell them that…

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Under a Double Rainbow: Autism and LGBTQIA+

Photo © Ted Eytan | Creative Commons/Flickr [image: Multiracial crowd rallying with flags and signs behind a banner reading “Trans Solidarity against transphobia for justice”.] Maxfield Sparrow unstrangemind.com Ten years ago, I wanted to write a paper about autism and gender issues for a gender and sexuality conference at which I had previously presented. I started the research, then dropped into a depression after realizing how little material was available, and that the existing research about autism and gender was both dismal, and erasing. The medical journals talked about transgender autistic children as if their gender issues were delusions, mere symptoms of their autism. I never wrote that paper. Today, not only is there good autism information available, but the “double rainbow” of being both autistic and LGBTQIA+* is just beginning to be more accepted and understood. We have a long way to go, but people are beginning to understand…

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Hard Truths: Disability and Poverty Go Hand in Hand

Maxfield Sparrow unstrangemind.com Photo © *Hajee | Flickr/Creative Commons [image: Person with black hair and a blue coat. They are holding a hand-lettered cardboard sign over their face. Sign reads, “VERY HUNGRY PLEASE HELP!”] I am not the only Disabled person economically struggling, as disability and poverty go hand in hand. Why is that? The answer is complex, since disability leads to poverty and poverty leads to disability. It’s a vicious cycle and sometimes a downward spiral, leading people to lead lives perpetually circling the drain, always on the edge of annihilation. Let me see if I can untangle some of it for you. “You’re dooming yourself to a hand-to-mouth existence.” That’s what my parents told me when I dropped out of high school. And they were right. Well, they were half-right, anyway. I have spent the last three decades living hand to mouth, but it is not a fate…