Shannon Des Roches Rosa Let me tell you something that may or may not surprise you: When it comes to public discussions about autism, parent and professional voices tend to dominate, and autistic voices tend to be excluded. While that dynamic is changing, primarily due to autistic advocates’ refusal to be sidelined in stories about their own community, and in part through the many communities that encourage parents to discover, listen to, and respect the experiences of those who have lived autistic lives — autistic voices too often still get dismissed, ignored, or outright disrespected. I’m not begrudging parents of autistic kids the right to tell their own stories from parent perspectives, obviously, being that I’m one of those parents myself. But I do find it unsettling when parent stories mention autistic perspectives only to belittle or reject them, as Anne Spence did recently in her otherwise thoughtful story When…
Tag: self-advocates
Alyssa yesthattoo.blogspot.com Trigger Warning: Mentions of abuse, tragedy/burden talk There are plenty of autistic people blogging, mostly adults since it’s mostly adults who blog. Most of the blogs I’ve read, most of the autistic adults who are involved in advocacy that I’ve talked to, most of the parents who “get it” say how important it is to listen to autistic adults. Some people might take the “what’s in it for me” approach. I’d prefer that self-determination and the right to be included in conversations that concern your own future be reason enough, but just in case it isn’t, here are some answers of how it really does help parents to read self-advocate blogs and how it really does help kids when their parents “get it,” which is a pretty common result of reading them. You can have hope. Too many of the resources you will find about autism paint a…
Shannon Des Roches Rosa www.Squidalicious.com Autism parent Amy Lutz did her damnedest to verbally maul the Neurodiversity movement last week, at Slate.com. I’m still trying to understand her rationale, because why would she publicly attack disabled people for the crime of appearing less disabled than her own child? Especially the very advocates who are fighting to ensure a better future for all autistic people — including her son? I’m used to seeing questionable writing at The Huffington Post, but was surprised to see Lutz’s baldly biased reporting in the Slate.com Medical Examiner section. She only cited sources — outraged parents like herself, mostly — who also believe “…that those who argue the Neurodiversity position do so out of ignorance.” A statement which is not merely offensive but untrue: those who support Neurodiversity tend do so because Neurodiversity is their reality, and the neurodiverse their community. Autistic adults are not the…
Shannon Des Roches Rosa www.squidalicious.com Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen. –Winston Churchill You’d think we parents of kids with special needs — righteous avengers that we so often are — would be extra-invested in listening to the self-advocates who share our children’s experiences, who in many cases used to be our children. You’d think someone like me, who truly believes behavior is communication, would take more time to understand why a self-advocate would criticize something I’d written, would ask for more information before reacting, would understand that a self-advocate can both be articulate and need communication accommodation. You’d think that, knowing how many times even well-meaning people have dismissed my son’s needs or spoken to him as though he was an obedient puppy, I’d understand how self-advocates might have very little patience for parents…
Julia Bascom juststimming.wordpress.com Our Story: The Loud Hands Project is a publishing effort by the Autistic Self Advocacy Network. Currently, we are raising money towards the creation of our first and foundational anthology (Loud Hands: Autistic People, Speaking) and accompanying website. Loud Hands: Autistic People, Speaking features essays, long and short, by Autistic authors writing on autism acceptance, neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands). Questions posed to the contributors might include what does autism mean to you; why does Autistic culture matter; what do you wish you had known growing up Autistic; how can the Autistic community cultivate resilience; what does “loud hands” mean to you; and how do you have loud hands? The anthology is the first of a projected series featuring contributions from Autistic writers stressing the preservation and celebration of Autistic culture and…
The holidays are upon us, and that means hanging with folks who might need a nudge or a gentle reminder about holiday kindness and accommodation for autistic kids and adults, on being nice about understanding autistic behaviors versus assuming naughtiness. One thing we’ll be seeing in our house as my son adjusts to an atypical schedule is stimming. Lots of stimming. Some of Leo’s stimming needs redirecting, but most of it is functional and self-soothing. Our friends and family get why Leo stims and what he needs, they have his back; Leo will be fine, we’ll be fine. But if you or your child need stimming functionality backup or want to help understand why stimming doesn’t just matter but can be very necessary, I suggest citing Zoe’s About Stimming, or Julia Bascom’s The Obsessive Joy of Autism. Or, you could just sing folks this song, which I came up with…
We couldn’t be more grateful, humbled, or thrilled about the first wave of reviews for the new Thinking Person’s Guide to Autism Book! Steve Silberman, investigative reporter for Wired and other national magazines, declared Thinking Person’s Guide to Autism his Book of the Year (!): Covering a wide range of nuts-and-bolts subjects — from strategizing toilet training and and planning fun family outings, to helping your kid cope with bullying, to identifying the issues that a skilled speech-language therapist can work on with your child, to spotting and avoiding “autism cults,” to navigating byzantine special-needs bureaucracies and providing your child with appropriate assistive technology, to fighting for your kid’s right to an individualized education — the Thinking Person’s Guide to Autism is bracingly free of dogma, heavy-handed agendas, and pseudoscientific woo. What distinguishes it from, say, the fine guide for parents recently made freely downloadable by the National Autism Center, is…
We held a dialogue series last week between self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network; and parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords. The series continued this week with Melody Latimer, director of The Autistic Self-Advocacy Network’s Dallas-Ft. Worth chapter and blogger at ASParenting, Kassiane of Radical Neurodivergence Speaking, who prefers the term “advocate,” self-advocate Amanda Forest Vivian, blogger at I’m Somewhere Else, and autism parent Kristina Chew, who blogs at We Go With Him and Care2.com. You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue Our thanks, once more, to everyone who had participated in the Dialogues. We’ll wrap up with a reminder of why we hosted this series in the first place: Because it needs to happen. Because being a parent of a disabled child is not the same experience…
We held a dialogue series last week between self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network; and parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords. The series continued this week with Melody Latimer, director of The Autistic Self-Advocacy Network’s Dallas-Ft. Worth chapter and blogger at ASParenting, Kassiane of Radical Neurodivergence Speaking, who prefers the term “advocate,” and self-advocate Amanda Forest Vivian, blogger at I’m Somewhere Else. You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue. Today’s post is by autism parent Kristina Chew, who blogs at We Go With Him and Care2.com. -The Editors —- What A Parent Can Learn From This Dialogue As I started teaching my first class (8am, Elementary Latin) of the 2011-2012 school year, the thought occurred to me: The freshmen students in the first few rows are just a…
We held a dialogue series last week between self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network; and parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords. The series continued this week with Melody Latimer, director of The Autistic Self-Advocacy Network’s Dallas-Ft. Worth chapter and blogger at ASParenting, and Kassiane of Radical Neurodivergence Speaking, who prefers the term “advocate.” Stay tuned for two more autism parent posts: One from a neurotypical perspective, and one from an Autistic perspective. You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue. Today’s post is by self-advocate Amanda Forest Vivian, blogger at I’m Somewhere Else. -The Editors —- This is just a theory, so be gentle. But I think a lot of problems between non-disabled people and disabled people might have to do with the fact that for most born-disabled people,…