1643134715_a9d2c63188_k-6343831

It’s Time For Autism Research To Do Better By Autistic People

Photo: Charlene Croft | Creative Commons / Flickr [image: hand of a person with light skin arranging long red, green, and yellow construction blocks in a line.] Shannon Des Roches Rosa @shannonrosa Autism research is mostly failing my teenage son and his autistic community. Saying something so forthright may seem harsh, but this is the Greta Thunberg era—and we’re now telling people what they need to hear, not what they want to hear. I’ve been going to autism science conferences and scrutinizing autism research for nearly a decade, and during this time most autism studies have remained mired in areas like causation—a pursuit that does absolutely nothing to improve the lives of autistic people who are here already. Even more frustratingly, when research does address the needs of existing autistic people it does so with the goal of “intervention,” rather than focusing on quality of life, and largely neglects those…

9606781879_5a0f7292d5-3679200

How to Be The Teacher Our Autistic Students Need

Photo © US Department of Education | Flickr / Creative Commons [image: A Black adult with curly medium brown chin-length hair and glasses reading a book with a young Black student with long black hair in cornrows.] Miss A teachingunicorn.com I am a special education teacher who happens to have an autistic teen and a recent autism diagnosis of my own. I’ve sat on multiple sides of the table; I’ve seen a lot. And we’ve all seen the headlines where professionals have demeaned or abused students in their care. We all think, “I’m not like that!” But I’ve seen professionals limit or take away a child’s voice. I’ve seen students given mindless and meaningless tasks. I’ve heard terms like “pre-learner” and “so low.” I’ve seen students spend years without access to reading and writing instruction. And I’ve seen professionals doing all of these things without realizing the harm they are…

deejpress5-9660313

Distorting DEEJ: Deconstructing A Misinformed Literature Review

[image: Production photo of David Jame Savarese (Deej), a thin white male with short, cropped hair and glasses, wearing a light blue polo shirt and beige slacks, seated at a table facing his girlfriend who is seated in a power chair back to us, facing  him. A man holding a camera is standing to their left and caught in the act of filming them. ©DEEJ movie www.deejmovie.com/press] Kerima Çevik theautismwars.blogspot.com “A distinguishing feature of scientific thinking is the search for falsifying as well as confirming evidence. However, many times in the history of science, scientists have resisted new discoveries by selectively interpreting or ignoring unfavorable data.” Wikipedia on Confirmation Bias I understand that professionals who aren’t familiar with autism and autistic lived experience may carry biases about non-speaking autistic people. I don’t accept it, but I understand it. We’re human and all of us have biases. When bias becomes a…

adamwolfrondbeach-2858004

Inter-Views: A Typing-Only Podcast Listening Party

Adam Wolfond [image: A young teenage boy with brilliant brown hair sitting on the beach.] Adam Wolfond soundcloud.com/awolfond I have a podcast called Inter-Views. My first podcast was an interview with artist Ellen Bleiwas. Ellen collaborates with me in thinking about art and movement at The A Collective in Toronto, Canada. She is a kind and wonderful artist. The Inter-Views podcasts are not about me but about sharing views. I like that I am not asked questions about autism. People should learn with others. I am hoping my podcasts will reach people. In the interviews I manage to type to communicate and my guests mostly talk. I had an Inter-Views listening party recently because I wanted lots of people to hear what we do and I wanted open minds about how people like me type to really talk. The interesting part of the interviews is the way insides of thinking…

imightbeyou-9115635

I Might Be You / Neurodiversity: A Review of Two Books

[image: Cover of the book “I Might Be You,” showing two seating white women facing and engaging with each other.] Maxfield Sparrow unstrangemind.com I Might Be You: An Exploration of Autism and Connection (2012) By Barb Rentenbach and Lois Prislovsky; Audio version (2013) read by Lois Prislovsky PhD and Ariane Zurcher Neurodiversity: A Humorous and Practical Guide to Living with ADHD, Anxiety, Autism, Dyslexia, The Gays, and Everyone Else (2016) By Barb Rentenbach and Lois Prislovsky; Audio version (2016) read by Chad Dougatz, Lois Prislovsky PhD, Carol Riggs Holloway, John Bond, and Jery Yarber I read “I Might Be You” in 2014 and loved it, but never thought to review it back then. When I discovered that Barb Rentenbach and Lois Prislovsky had a second book out, I got it in an Audible version and, on a whim, decided to get the Audible version of “I Might Be You” as well, and…

4802134274_3ef3a4de24-5132754

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…

proloquo2go2benglish2bipad-5403641

How Apple Is Honoring World Autism Acceptance Day and Month

How excellent to see major cultural influencers like Apple honor Autism Acceptance during April, like this an Apple announcement about the month’s strategy and events, and descriptions of the apps in their Autism Acceptance Collection—including some excellent app discounts: From Apple: Sunday, April 2 is annual World Autism Acceptance Day, which kicks off Autism Acceptance Month. One in 68 U.S. children has been identified with autism spectrum disorder (ASD) according to the CDC. Since we introduced iPad in 2010, we’ve heard from many parents, children, adults and therapists that iPad has been a key communication tool for Autistic people. And there are now some wonderful apps for Apple Watch as well, such as Proloquo4Text which now not only offers the ability to show your message to your communication partner, but version 3.1 also allows you to speak the message aloud right from your Apple Watch. But perhaps even more moving…

Do Me a Favor

Christine Stephan daysixtyseven.blogspot.com I don’t like to advise people. I don’t like being in a position of telling others what to do. But I am a person of strong opinions. And just this once I’d like to tell you to do something. And by “you,” I especially mean those who love and support non-speaking autistic people of all ages. I want you to promise that when you find yourself explaining to someone that you have no idea what your loved one knows or understands that you will also quickly explain that you believe he understands everything and just hasn’t yet found a way to let the world know. When you observe your loved one behaving in a way that you don’t understand and he can’t explain, promise me that you will believe that he is trying the best he can and that he is as frustrated — probably more so…

Congressional Autism Hearing Recap

The stated goals of yesterday’s Congressional Oversight and Government Reform Full Committee Hearing: “1 in 88 Children:  A Look into the Federal Response to the Rising Rates of Autism” were to “…get a clearer picture on what is being done, what questions still need to be answered and what needs exist for those children, adults and families who live with an Autism Spectrum Disorder.” This hearing was notable for its precedent-setting inclusion of autistic representatives. Committee Chair Darrell Issa noted that as long as he heads the committee, it will stay open to autism concerns and may even try to find funding to address them. Video coverage of the entire hearing is embedded at the end of this post. The hearing witnesses (and each’s official testimony): Alan Guttmacher, M.D. (testimony) Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health Coleen Boyle, Ph.D. (testimony)…

photo-2-8191690

An AAC App and Autism Success Story

AAC, or Augmentative and Alternative Communication, provides many autistic people with communication options. We keep hearing how some of those same people are discovering new tablet- or app-based AAC options that even better suit their needs. One such person is Nathan, whose mother Lisa Valerio describes him as, “a 9 year old boy with autism who loves playing outside, swimming, jumping on the trampoline, painting, and putting together puzzles. He uses his the LAMP for Words app now to communicate.” Can you tell us a little bit about how you came to be an AAC family? My son Nathan has autism and verbal apraxia, and after many years of struggling to communicate (and intense SLP services) we determined he needed an AAC device — and became an AAC family. What kind of AAC technology has Nathan been using? How did you choose it? When Nathan was younger we started with…