Our state, CA, allows those with I/DD to have support people stay in the hospital with them, but this isn't universal. And even if one of us were to stay with my son, pandemic safeguards & protocols would make that experience exponentially more stressful & fraught than usual. 26/
Federal civil rights prohibit medical discrimination against PWD, but if choices need to be made, I worry that my son may be denied care due to negative stereotypes about disabled people's quality of life—that’s what recently killed Michael Hickson: npr.org/2020/07/31/896…
27/
I wish people would stop the masking bombast: both those who refuse to wear masks for "personal freedom" reasons, & those whose "Mask It or Casket” slogans mean anyone who doesn’t wear a mask is a selfish ass who doesn't understand how masks protect us from this coronavirus. 28/
So, my plea: If you can wear a mask, please do. If you can't, please protect yourself by social distancing & hand-washing. And if you see a dude not wearing a mask and he's not close enough to imperil you, leave him alone. You might be looking at my autistic son. 29/29
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I see you when you are having a tough day yet still manage to interact with your child with respect and kindness.
2/
I see you when you keep your voice calm during crises, because you know your autistic child is extra-sensitive to emotions and they need you to help them keep it together, or get it back together. 3/
I think it should be OK to write about our autistic kids. I do. I think other parents, esp. those not autistic themselves or new to autism, need parent role models who do their best to understand & love their autistic kids, & be the parents those kids need them to be. Thread. 1/
Parent role models are needed bc media messages/social attitudes about autism & autistic people are consistently fear-ridden & awful, so parents primed on autism negativity need guidance for accepting who their kids are—so they can avoid blaming their kids for who they aren’t. 3/
What will we be talking about? Well, I’m mostly interested in creating sensory-friendly homes and environments. 1/
@TheSTARInst Specifically, it’s crucial to understand that we CAN create sensory-friendly environments that allow everyone therein to function best. It isn't always easy, and can mean compromise if there are competing access needs. 2/
@TheSTARInst By placing a focus on how autistic people (and others with sensory sensitivities) perceive and process their environment, and by reframing sensory modifications as caring adjustments rather than impositions, we can create spaces in which we all thrive. 3/ #neurodiversity
It’s tricky to be a parent advocate in the autism community, especially if, like me, you are not autistic yourself. Autism is about autistic people, & that’s who should be leading autism advocacy efforts. Threading my recent @AutismOAR column:
@AutismOAR …But in the nearly two decades since my son was diagnosed, I’ve learned that I do have a role as an advocate: To learn and share and fight for the policies and knowledge needed for my son to live a good life as an autistic person.
Parents of autistic people simply can’t avoid being advocates. It is not reasonable to be passive when our loved ones need so much support, & when there are so many roadblocks to getting that support from educational, social, & medical networks that are supposed to provide it. 3/
I can’t stress just how screwed most parents of autistic kids are when it comes to finding good info that will actually help those kids and their families live the best lives possible. PLEASE LET ME HELP YOU LIVE YOUR BEST LIVES, and you can start by listening to autistic adults.
And I don’t mean “listen to all autistic adults without any filter” because autistic adults can give mean, awful, horrible advice, just like any randos from a huge diverse group of humans. But let me guide you to the good sources! My son’s and my lives are so much happier now!
To start: here’s what I’ve learned about parenting & autism: After an Autism Diagnosis: 13 Necessary Next Steps For Parents: thinkingautismguide.com/2017/03/after-…
When your child get an autism diagnosis: Here are 13 next steps for parents that I WISH someone had told me at the time! A thread, drawn from the @thinkingautism archives, and in observation of #AutismAcceptanceMonth
After my son’s autism diagnosis, I wished it hadn't taken me so damn long to figure out the best ways to support, help, advocate for, and express my love for my now-adult son—who has always deserved better than a reeling, terrified, depressed, confused, and regretful mom. 2/
I should have given myself more time to recognize my wonderful autistic boy for who he is, rather than what ignorant, misguided people insisted autism made him. I also wish I'd been able to recognize and dismiss all that debilitating ignorance, fear, and confusion. 3/