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Advocating for Autism Acceptance in Tanzania

May 26, 2021January 31, 2022 by Shannon Des Roches Rosa

M. Kelter theinvisiblestrings.com CN: Physical abuse A few months ago, I was contacted by an autism support organization in Tanzania, and asked to follow their upcoming public events on social media. The group is called the Living Together Autistic Foundation (Li-TAFO) and created these events as a way to share autism education and reduce stigma in communities that otherwise have little to no resources available. As these efforts began to unfold, it was clear from their Instagram page that audiences, initially small, were growing into much larger crowds. To better understand the purpose of these events and their potential impact, I communicated via email with Li-TAFO’s creator, Shangwe Isaac Mgaya, who is currently endeavoring to create an autism center in her area that would be the first of its kind. Photo © Li-TAFO. [image: Photo of a group of Tanzanian adults and children, in front of a LI-TAFO banner.] M: On…

Disability

About That “Coming Avalanche” of Autistic Adults…

April 28, 2017January 31, 2022 by Shannon Des Roches Rosa

Greg Love ageofneurodiversityblog.wordpress.com Waves in Santa Cruz, California. © Wonderlane, Creative Commons [image: Ocean waves breaking on a rocky shore.] It is currently autism “awareness” month, that time of year when autistic people are told that they are costly and burdensome, that they ruin families, and—even worse—that they’re growing in numbers (oh, the horror.) A petition has even circulated, since Donald Trump took over the White House, claiming autism must be declared a “public health emergency.” While these ideas remain disturbingly common, some parents are changing their tune, albeit unfortunately not in ways that actually diverge from “awareness.” Nowadays, parents and professionals are increasingly alarmed at the incoming “avalanche” of autistic adults who will be ill-prepared for the lack of services and supports after high school. It is true that the world scarcely cares to accommodate the support needs of autistic adults—yet at the same time it can no longer…

Disability

When Strangers Don’t Care About Accommodating Autistic People

January 14, 2013January 31, 2022 by Shannon Des Roches Rosa

Shannon Des Roches Rosa www.squidalicious.com Honestly, I don’t give a fig about strangers judging how I parent my autistic son. I know I’m doing my best with all three of my kids, and am also constantly learning from my mistakes. Plus Leo has the same right to be in public as anyone, as long as (also like anyone) he’s not being disruptive. If he’s having a hard time, there’s always a good reason, and we move on. Riding the Ducks, with our Duck Quackers [image: My three kids using yellow “quacker” whistles. Leo’s sister is helping him with his.] What I do care about is how strangers respond when Leo needs accommodation. And a few months ago, when I reluctantly pulled out the autism card to ask if Leo could jump the queue for a public restroom, a stranger lectured me on how autism did not justify my request, and…

Disability

Autistics’ Slice of Life: Autism Acceptance Month on TPGA

April 1, 2012January 31, 2022 by Shannon Des Roches Rosa

Because we consider April Autism Acceptance Month, Thinking Person’s Guide to Autism will feature “Slice of Life” conversations with Autistics of all ages — kids through adults — for each of the month’s remaining 29 days. We will profile a different autistic person every day, answering the same set of questions — in a similar spirit to (although for copyright purposes otherwise unlike) the Proust questionnaire capping each issue of Vanity Fair magazine. Why? We’d like to help our non-autistic readers get to know autistics as people who have interesting, complicated lives, and who are as diverse and varied as any other random population united by a label. We are the people in each others’ neighborhoods, and the more we know about each other, the more visible we and our children are, the more common Autism Acceptance will be. That is our hope. We’d also like to encourage you to…

Disability

Communication: A Million Little Things

October 7, 2011January 31, 2022 by Jen Myers

Lydia Wayman www.autisticspeaks.wordpress.com If I knew what to say, I’d tell you a million little things that I’ve acquired in my brain over the weeks and months — and lifetime. If I could, I’d tell you that I’m so over age appropriateness. You say Disney and American Girl isn’t age-appropriate for me? Well, excuse my language, but I say you can shove it. I would, if I could, ask you what is the point of encouraging age appropriate interests? Is it to make friends? I have many, even more than I can keep track of sometimes. Is it so that people will like me? Hate to break it to you, but people already do like me (not everyone, but, well, obviously, right?). Is it so that I can be normal? And to what end, I would ask? If I’m comfortable with it, you should be comfortable with it, and that’s…

Disability

I Want to Tell You a Secret About Autism Awareness

August 5, 2011January 31, 2022 by Shannon Des Roches Rosa

Shannon Des Roches Rosa www.Squidalicious.com www.ThinkingAutismGuide.com I want to tell you a secret about Autism Awareness. I’m telling you because you have a stake in the autism community; whether you touch one or many lives, you can change them, you are powerful. And, like me, you care. You want to make a difference — for yourself, for your child, for someone you love, for someone who depends on you. And you can make a difference, you will, if you keep this cornerstone of Autism Awareness in mind at all times. Ready? Here it is: Behavior is communication. That’s it. That’s all. That’s everything. If you put your mental backbone into behavioral awareness, into trying to understand why a person with autism, or a person associated with autism, behaves the way they do — if you can make yourself truly aware of that person’s needs — then that is when the…

Disability

Good Cop

July 11, 2011January 31, 2022 by Shannon Des Roches Rosa

Carol Greenburg aspieadvocate-ascd.blogspot.com I could have kicked myself for not getting the name of the wonderful New York City police officer who pulled me over the other night. I’m a safe driver for the most part, but Asperger’s sometimes interferes with my perceptions whether I’m standing still or navigating a dark road. It was rainy, I was distracted, and if I can’t even read body language … Well, I was as I so often am, stumped. Even at my best it’s sometimes unclear to me why people honk their horns at me, so when the cop driving behind me started waving his hands I didn’t know if wanted me to get out of his way or whether he was trying to pull me over. Turns out it was the latter. I know this because he used his loudspeaker to announce to all of SoHo that I was to put my car…

Disability

My Fights With Autism and The Need for More Awareness

April 29, 2011January 31, 2022 by Shannon Des Roches Rosa

Kristen Kristen is eighteen years old and currently in her third year of high school. A statement I have always found confounding is, “I wouldn’t wish it on anyone.” Let me explain: I find this confusing because what if “it” could be beneficial or insightful for the whole of society? What if perspectives widen because of “it”? Who am I? I am an unknown Aspergian. I was diagnosed at the age of three, but with no follow up afterward. My childhood consisted largely of unwanted (probably neurologist) doctor visits where doctors would run test after test, and force me to look them in the eyes. I grew up with a degrading “you’re not normal” mentality. Needless to say, my childhood, like me, wasn’t “normal.” The doctors finally concluded that I had ADD and gave me Ritalin, which was useless. If that wasn’t cruel enough, in second grade I finally realized…

Disability

Patience, Awareness, and Justice

April 27, 2011January 31, 2022 by Jen Myers

Sarah MacLeod quarksandquirks.wordpress.com findingmygrounduu.wordpress.com During announcements, my heart dropped. The service leader announced, “Remember that at noon, we have our congregational meeting about the accessibility improvements to the church.” To be clear, I completely support the church’s improvements plan and the capital campaign required to bring them about. Armed with my knitting, I knew I’d get through the potentially too-long meeting to put these issues up for congregational vote. While the meeting may be tedious, it’s truly democracy in action, and the improvements are necessary. Our church is built on four different levels, connected only by stairs. We’re without an elevator (action item number one on the list), accessible bathrooms (item number two), and many other amenities that would make our facility the accessible building it should be. It’s an old building (the meeting-house is 160 years old) with numerous additions made over many years, resulting in a markedly unwelcome building for those…

Disability

An Interview with Carol Greenburg, Autism Women’s Network Regional Director

April 25, 2011January 31, 2022 by Jen Myers

I met Carol Greenburg last summer at the BlogHer conference in New York. Her confidence, humor, and commentary made her instantly appealing, but her kindness, fierce intelligence, and advocacy skills make knowing her both a luxury and a necessity. She is the executive director of Brooklyn Special Needs Consulting, and serves as the East Coast Regional Director of the Autism Women’s Network. She joined the Thinking Person’s Guide to Autism’s editorial board in January, where she adds her depth of knowledge as an advocate, parent of a special needs child, and an adult on the spectrum. ~Jennifer I’ve joked with you before that you really “have it all.” You’re an adult with Asperger’s syndrome, the mother of an autistic child, and an advocate in the autism community. Do you have trouble switching hats? Do you compartmentalize? I try to compartmentalize. I think that’s the only way to really do it.…