"I think if I didn’t have my loving pleasant Mom to help me through the last little while I would have been a bigger blob or mess. This is a shout out to those that give of themselves freely to let good charges shine." — Jordyn Pallett, nonspeaking autist
In 2019 I shared a blog post by nonspeaking autist Dillan Barmarche in this thread.
Here Dillan appears in an iPad advertisement.
Amy Sequenzia is a nonspeaking autistic disability rights activist. In this 2018 statement, Amy talks about the right to use her chosen form of communication, FC. #AACAwarenessMonthawnnetwork.org/my-right-to-co…
In this earlier post, nonspeaking autistic activist Amy Sequenzia explains how her chosen means of communication, FC, works. ollibean.com/amy-sequenzia-…
Nonspeaking autist DJ Savarese of @DeejMovie fame also uses Facilitated Communication (FC) among his many modes of #AAC. (FC was not allowed for his college entry exam, though, so there he was given extra time.) Here he talks about what helps. dsq-sds.org/article/view/1…
Ooh, I'm behind, our South African bloggers are blogging ahead of me!
Here's nonspeaking autist Nicolaas Paulsen from the Karoo in an August 2020 post about misunderstandings, getting comfort from his device, and getting stuck there.
"Today was awesome!" Niko Boskovic wrote last Thursday. Niko is a nonspeaking autistic #AAC user. "It was the first time I've been out of the house in months. I felt like I was making a new friend and not just being supported by a paid companion." (Keep reading...)
"This type of relationship is hard to balance because the support person is the one who sets the predictable course of THEM helping YOU."
"But once in a while, someone comes along who does it so naturally that they don't look at it as support so much as making sure you can enjoy things too."
"They see you as an equal who happens to need a different set of rules, and they really try to access the tools you need to be successful. It really is something wonderful to be so understood."
Nonspeaking autists are among the most vulnerable, and being chronically ill ups your risk.
Just a few more days left of #AACAwarenessMonth... Here's a post by the late Mel Baggs (@myceliorum) about handling a certain difficult person, using #AAC.
"We, already struggling with the difficulties imposed by lack of speech, are also deterred by obstacles put up by others who refuse to see us as full human beings with similar needs and the capacity for communication."
"I am the autistic you insist on calling “severe”, “trapped”, “a burden”."
"I am the autistic you mention in you reports as part of a group of people with a “bleak future”."
"You love talking about me but you don’t want me to be part of the conversation."
- Amy Sequenzia
"I am an autistic woman, non-speaking and I have many needs. I cannot be left alone and I need constant care. Before I was able to type my thoughts, I used to have epic meltdowns."
Amy Sequenzia writes to the media about how they portray people like her.
An interview with Zekwande Mathenjwa, the nonspeaking autistic teenager from South Africa who will be who one of the hosts of the international SpellX event on Saturday 7 November 2020. i-asc.org/zekwande-mathe…
Sign up for SpellX (an online TEDX style event on Saturday 7 November) presented by nonspeaking autistic people from around the world.
"My greatest day since being able to communicate, was SpellX 2020."
Nonspeaking autist Nicolaas Paulsen, age 14
"I have always dreamed off making my words be heard over the world so that people can hear what I have to say about my most beautiful words and the way my body and my disruptive ways are my prison."
Nonspeaking autist Nicolaas Paulsen, age 14
"My words are now set free to fly all over the world."
This, in a nutshell, is what "severe autism" means for many "severely autistic" people. The difference is that Damon Kirsebom received therapy for his apraxia, enabling him to spell out his thoughts.
Damon's presentation was first screened at SpellX earlier this month. Here is another SpellX feature of a completely different kind. This is nonspeaking autist Imane Boukaila with a creative contribution titled 'Come Into My World'. vimeo.com/478606086
Thanks to @Imanestardust, I've become aware of this creative collaboration at the Neurolyrical Café. A group of nonspeaking autists from Unrestricted Interest worked got together with @IASCspells to produce the lyrics for the song 'Many Ways to Speak': chrismartin.substack.com/p/many-ways-to…
To this day, this seminal video by the late Mel Baggs (@myceliorum, nonspeaking autist) still forces us to face parts of our collective soul which many of us choose to suppress.
Here is the trailer of Wretches and Jabberers, Tracy Thresher and Larry Bissonnette. Tracy and Larry are autistic and don't have much functional speech, but communicate effectively via AAC... and art.
Today's documentary directed by and featuring 11-year-old nonspeaking autist Cadence Elizabeth, is a bit different.
Many of the nonspeakers in this thread are good at understanding other people's spoken words, but bad at fine motor skills. Cadence is the opposite; she can draw and write well, but struggles to understand speech.
Danny Whitty's blog came to my attention via his sister/ally/CRP (communication and registration partner) @tswhitter.
Danny is a minimally and unreliability speaking autist.
People may think a minimally speaking autist is "probably acting out because he wants his cookie", without realising he's NOT just "wrapped up in his own world" but very much connected, and it's the bigger picture that's distressing.
"So not only are we on Robert Frost’s less travelled road," writes nonspeaking autistic academic and activist @HariSri108, "but we often have to create this road from scratch."
"When you think of mistakes as clarifications, it's a chance hopefully, to backtrack a bit, adjust a bit, and get back in there”
Hari Srinivasan, nonspeaking autistic activist and academic
Today the Kindle version of 'The Autistic Mind Finally Speaks: Letterboard Thoughts' is available for free on Amazon. It's by nonspeaking autist Gregory Tino and four illustrators. amazon.com/gp/aw/d/B08MDH…
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[THREAD] If you're an autistic activist who speaks, and you've recently joined the fight for the communication rights of nonspeaking autistic people, I want you to know that you're going to have opposition, particularly from ABA people. This thread is to help you in that fight.
Your priority shouldn't be policing person-first language and puzzle pieces, or people calling themselves 'autism moms'. Those things can wait. Your focus should be on communication access for their children. You need to SUPPORT them in getting that. They may not know it exists.
I have been in this area of advocacy for several years now, as a speaking autist advocating for nonspeakers' rights, and I am able to share some of my learning with you on what works and what doesn't. You win some, you lose some. Let's learn together.
For nonspeaking autistic people, good fine motor skills and coordination are rare.
Expressive facial communication, fancy dance movements -- these things are SUPER difficult for many nonspeakers because of...
The reason why I am doing this poll is because recent representations of a fictional nonspeaking autistic character in some entertainment videos doesn't take the actual problem into account at all.
This can create a huge misunderstanding of autism, because to non-autistic people, the character looks autistic, so the character informs people's picture of autism.
Someone I know in the autism industry told me they are going to be selling this social skills programme called Bridges. I had some criticisms on the surface, which I gave them, but I also want to be #AskingAutistics what your experiences have been of this. bridgessocial.com/for-profession…
Here are some of the things I said to them...
Regarding point 1, there is HEAVY criticism of that assumption in the autism world out there at the moment. Point 1 (Baron-Cohen approach) views the deficit as vesting in the autistic person alone.
This is such a common thing now. Just say there's a conspiracy, and that's evidence enough for QAnon supporters. Throw Soros into the sentence and that's verification for them.
When you ask them for REAL evidence, they go, "OMG do your own research! Don't you know how to use Google?!"
So you use Google and produce evidence to the contrary of what they say, and they move on to, "Think for yourself!"
Science communication is one of the most essential jobs in the world today. Not just, "What scientists say" or "What science says" (because many people don't trust that), but "HOW SCIENCE GETS ITS ANSWERS".
Jacob Harbin is a nonspeaking autist who studies the Bible for guidance on life's challenges. Here's a blog post which he wrote last year. anchorofhopefoundation.org/single-post/20…
Nonspeaking autist Hari Srinivasan lectures on disability justice. #DisabilityRights#CRPD
Here's a short video by 17-year-old nonspeaking autist Jordyn Pallett in preparation for the Innovations in Education Conference 2020. In a few days, I will share one of Jordyn's full presentations at that event.
I am encouraging a boycott of autism research participation by autists and parents of autistic children, unless autistic people are involved in setting the goals of the studies. Don't participate just because it's about autism. The study design and ethics may be up to maggots.
People who participate in ethics committees are not necessarily trained in the #CRPD. In my experience, many of those people are clueless about the realities of human rights.
A simple example is that many of the supervisors and ethics people insist on researchers using person-first language in research papers, which is exactly what most autistic participants in English-speaking environments DON'T want. (This is, like, 'Autistic Culture 101'.)