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Boy mom with Asperger’s | published author | French transplant in Austin, TX | chatting all things #autism
I found a place in Austin with gluten-free sandwiches 🙌🏻 Always a little nervous when trying new places, though, so I keep @matys nearby. #MatysPartner It gives safe, natural heartburn relief that works quickly. Maty’s uses natural ingredients like Coriander Seed, which is a natural digestive aid, and Ginger Root too. I love that it’s natural so I can take them as often as I need. Do you use natural products? Why or why not? Click the link in my bio to add the Maty’s All Natural Acid & Indigestion Relief to your CVS cart and be sure to follow @matys on social! [AD] #MatysSquad #MatysMatters
When autism is no longer invisible We’ve reached the point where Charlie’s autism is no longer an invisible disability. It’s reasonable for anyone who sees a seven-and-a-half-year-old at the grocery store hysterically jumping, squealing, and flapping his hands, to stare. A couple of times, in response to Charlie’s intense’s hand flapping, I heard a little kid ask their parents what was wrong with Charlie or why he was doing that. Teach your children about autism and stimming
Let’s talk autism acceptance. I wish we could find a middle ground between “autism is a superpower” and “autism is the end of the world”. Many believe we shouldn’t use severity levels anymore and that autism is a difference, not a disability. I believe there’s a way to be an autism advocate without losing sight of how severely (and sometimes negatively) many autistic people are affected. I personally see both sides of the spectrum every day. I live with the struggle of a disability that’s often ignored because it’s not obvious, and I’m fighting each day to take care of Charlie, whose struggles are extreme. The “same” disorder allows both the heartbreak of my child not being able to communicate most basic needs, and the joy of my being able to write about autism and discuss it with people worldwide. So when it comes to autism acceptance, I believe the answer is somewhere in the middle. We need to keep in mind how broad the spectrum is. There are people on both ends of it, and some somewhere in the middle too, with levels of functioning varying drastically from one person to another, and one day to the next too. While it’s wrong to assume that someone who is severely autistic can’t do anything, or that someone who doesn’t speak can’t communicate, it’s important to remember that many autistic children never grow up to be independent adults. Some will never learn to communicate, and they’ll require 24/7 care for their entire life. It’s okay to see your autism as a gift, as long as you acknowledge that for many, autism is a severe disability.
Dr. Roger Jou founded CASY (Community Autism Socials at Yale) in 2014. (Dr. Roger Jou does not attend these groups), others are open to everyone like a weekly community meeting and Friday happy hour (alcohol-free). Impelled by the determination to understand his work in its totality, Dr. Jou’s education continued beyond the M.D. he was awarded in 2003, earning him a master’s in public health in 2004 and a Ph.D., ultimately, in 2012 (investigative medicine). The more he learns, the more interested he becomes, which relentlessly fuels his drive to find sustainable, community-based solutions that address the varied needs of individuals on the autism spectrum.
Progress, not perfection. By now, you’ve probably heard about the controversy around Sia’s movie. The starring role is a woman with nonverbal autism played by Maddie Ziegler, an actress without autism. Disability activists have been telling Sia that her choice of an actress was ableist. I wasn’t going to speak out on it, but now that the story is gaining national traction, I’ll say it loud and clear: that is bullshit. Here’s why: 1) It’s positive that Sia chose to portray someone on the spectrum at all. Someone who's not a man. Not a cliché savant autistic person. She's a nonverbal autistic woman who uses AAC to communicate. 2) Sia did hire people who are on the spectrum — 13 of them. 3) As autistic individuals, we are not entitled to favors. For the lead role in this film, they hired the best actress. That’s it. This isn't to say an autistic actor couldn't have been both good enough and right for the role, just, in this case, they weren't. There are tons of autistic adults, myself included, who found the trailer heartwarming and look forward to seeing the movie. Would it have been nice if the main actress was on the spectrum? Sure. Is it worth harassing Sia and calling a boycott to her movie for it? Hell no. Some of Sia’s answers added fuel to the fire, but I don’t blame her. I’ve been in her shoes, and I feel for her. It’s difficult to be diplomatic when you have what feels like thousands of angry, irrational advocates swarming you. If only these angry people spent that same energy advocating for life-changing reforms — like access to affordable therapies for all autistic children. Let’s stop treating neurotypical people like the enemy. Most want to help; they want to be allies. Sia’s movie is progress. When informing someone of your opinion about what they could've done better, don't treat them like everything they've done is wrong and attempt to publicly shame them into adopting your view. If you get angry at every NT who publicly speaks about autism, eventually, you'll have no one of consequence left talking about it, and therefore, no one who cares. It's a fear and harassment-based silence, and that is not what we want.
For instance, if the weather allows, bring a bin of water beads outside (they’re non-toxic and biodegradable), or fill a bin with shaving cream and have your kiddo bring it in the bath. Charlie can spend hours happily playing with his autism sensory bins and that makes the mess worth it. Charlie is still mostly non-verbal (he has about 20 real words and a few more word approximations that no one but us understands) so we’ve been focusing on the Speech Therapy app in hope of increasing his vocabulary and pronunciation. We were tired of buying a new plastic water table every year because the quality wasn’t good enough, so this year we decided to make our home with a few pieces of wood.
We live in an age where social media dictates how we feel about ourselves. It’s difficult to put ourselves out there when people’s likes and comments, or lack thereof, define how we feel about ourselves. I’ve been there. I’d be lying if I told you that I don’t sometimes get scared before I hit “publish” on vulnerable posts. It’s not just the fear of people reacting negatively, but also the fear of people not reacting at all. I once read something along the lines of, “you can be the yummiest, juiciest peach in the world, but there will always be someone who doesn’t like peaches.” And that’s it. I think if we’re going to be happy with ourselves, we need to accept that not everyone will see us how we hope for them to — not everyone is compatible with everyone else. And that’s okay. That is okay. If you are proud of what you’re doing, of what you’re sharing, then that’s enough. Here’s your validation. Be your own biggest fan. Be proud of yourself for being vulnerable, for expressing something different, and for being unique and standing out when the world pushes you to fit in. At the end of the day, you need to be your own judge — your own validation. While it feels good to receive praise and acknowledgment from people you love, and internet points from strangers, if you don’t feel good about what you bring to the table, then it’s merely a victory. The best validation you can get is your own. It’s feeling so good about what you bring into the world that people's validation doesn’t matter. It doesn’t matter
There’s controversy around ABA therapy, a controversy I’d like to offer some perspective on. FALSE In ABA, stimming is discouraged only if it’s harmful to the autistic person or others, or if it’s so intense that it gets in the way of learning. We want to fade away the less functional and dangerous behaviors, like mouthing non-edible objects and running into the street, to give him a better shot at life. It’s okay to tell your child’s BCBA
We’ve reached the point where Charlie’s autism is no longer an invisible disability It's reasonable for anyone who sees a seven-and-a-half-year-old at the grocery store hysterically jumping, squealing, and flapping his hands, to stare. I don’t blame them — it’s human. A couple of times, in response to Charlie’s intense stimming, I heard a little kid ask their parents what was wrong with Charlie or why he was doing that. Every single time, the parent was embarrassed and told their child not to be rude. I don’t find it rude. And you don’t have to be embarrassed if your child has questions. Normalize it. Teach them about stimming. Explain that some children show their feelings differently. Don’t make it awkward! Non-harmful stimming shouldn’t be discouraged. We should strive to teach more kids about the different types of expression they'll encounter in the world 💙