Sunday, April 5, 2020

TPGA's Resources for COVID-19 Times

This is a selection of resources for autistic and/or disabled people and their family members during the COVID-19 pandemic. Feel free to suggest more options in the comments.

COVID-19 Information including Plain Language, Easy Read format, and Social Stories Resources

Animated COVID19 explainer for people with developmental disabilities (Oregon Office of Developmental Disabilities Services)

Autism and the Corona virus (Dr. Peter Vermeulen)

COVID-19: Advice and resources for autistic people during the pandemic (

One Autistic’s Guide to Thriving During Social Isolation / Social Distancing (Marie Porter)

The "Now, Next, Later" autistic-specific planning strategy (Jamie and Lion)

Thoughts from a Quarantined Autistic (Autistically Alex)

Social Stories explaining COVID-19 to Students

We are Heroes: A Plain Language Guide about Covid-19 (A4A Ontario)

General COVID-19 information 

California Regional Centers information:

Coronavirus (COVID-19) Information (CDC)

The COVID Tracking Project

How the Virus Got Out (New York Times)

World Health Organization, including daily updates:

Practical Advice and Resources

5 ways to improve hospital experiences for autistic adults (AASPIRE)

Automated Daily Check in Call for People Living Alone (I Am Fine)

COVID-19 Communication Rights Toolkit (Communication First)

COVID-19-Specific advice for managing stress and anxiety (CDC)

Determining Circles of Support

Empty Grocery Shelves Are Alarming, But They're Not Permanent (NPR)

Emergency Checklists Form

Emergency Plan Form

How to Clean Your Home for Coronavirus (New York Times)

How to Make a No-Sew Face Mask (Japanese Creations)

How to Make Gel Hand Sanitizer (WikiHow)

How to safely grocery shop during COVID19 times (Dr. Jeffrey VanWingen)

How You Should Get Food During the Pandemic (The Atlantic)

My Health Passport Form

Practical Do's and Don'ts about pets, sex, grocery handling, etc. (Mercury News)

Understanding Competing Accessibility Needs (Brooke Winters, TPGA)


If I Wrote a Coronavirus Episode (Vulture)
Machines of BART coloring sheets; click on the illustrations (Bay Area Rapid Transit)

Magical Bridge's FREE virtual concerts and sing-a-longs series

Netflix Party Browser: synchronized remote Netflix viewing (Chrome Browser Extension)

Science Fiction Short Stories of Hope and Happiness, Resistance and Resilience (curated by Maria Haskins at Strange Horizons)

Sir Patrick Stewart reads Shakespearean Sonnets

Advocacy and Rights Resources

Coronavirus: How These Disabled Activists Are Taking Matters Into Their Own (Sanitized) Hands (KQED)

Council of Parent Attorneys and Advocates (COPAA)

COVID-19 Advocacy and Resources (DREDF)

COVID-19 Resources (Center for Public Representation)

COVID-19 Resources (The Arc)

Disability Demands

Doctors Should Not Abandon the Principle of Nondiscrimination (Ari Ne'eman, New York Times)

How People of Color Can Advocate for Themselves During Emergency Room Visits (ZORA)

LGBTQ community and COVID-19 (Dorchester Reporter)

Preventing Discrimination in the Treatment of COVID-19 Patients: The Illegality of Medical Rationing on the Basis of Disability (DREDF)

Classroom, Homeschool, and Life-Long Learning

Audible's Stories collection, with selection from Littlest Learners to Teens, is making free audiobooks available "as long as schools are closed":

California State Parks Virtual Field Trips

California Academy of Sciences At Home

Education Companies Offering Free Subscriptions due to School Closings, from Amazing Educational Resources (note that we have not vetted all the sites listed, so proceed with thoughtfulness):

Free live online classes to support public school families affected by closures in the wake of COVID-19 (Outschool)

How Students Around The World Are Learning and Staying Positive (UNICEF)

How Stuff Works

Learn ASL (American Sign Language) Online, from Meriah Nichols

NASA Kids Club

PV Story Time: Children's Books Read Aloud

Storyline Online: Children's books read by celebrities

Donations, Relief, and Supports 

Blood Donation FAQ (Stanford Blood Centers)

COVID-19 Solidarity Response Fund (WHO)

Domestic Violence Hotline

Emergency Funds for Freelancers, Creatives Losing Income During Coronavirus (KQED)

Food Relief and Donations (Boys and Girls Club)

Food Pantries and COVID-19 (Kelly's Kitchen)

Relief Funds for Undocumented Workers in California

Thursday, April 2, 2020

Autism and Coping With Pandemic Stressors: Advice from TPGA Community Members

Photo © Tony Cheng | Flickr / Creative Commons
[image: Blue medical mask painted with a toothy, red-lipped smile.]
Content note: Discussion of self-injury, self-harm, and aggression.


Of all the varied stress bombs COVID-19 has lobbed at autistic people and their families, one of the more universal is the stress caused by routine disruption, coupled with constant close quarters. Few of us are at our best under such circumstances, so we wanted to share some advice and insights from autistic people and/or parents who are experiencing what you are experiencing about handling some of the tougher aspects, like increased tendencies towards self-injury and aggression.

We also want to direct people towards our existing resources:

First, we asked autistic adults about why self-injury and aggression can happen, so those in their lives can better understand and support them during the pandemic—instead of inadvertently making things worse (this doesn't mean that every incident can be solved, but the goal is making things better if possible).

Ivanova Smith
For me when I self injure it helps when people try redirect me something that doesn’t stress me out. Maybe think of something people enjoy doing indoors, and let them have extra of those things. Whether watching the same movie over again or humming. Maybe having something that is OK to damage, that I can take aggression out on. Sometimes I just squash my stuffed animals really hard. 
Ripping paper been helpful too. Like if you have old phone books, allow us to destroy those, or old magazines. 
Sometimes you have to let it run its course. It helps me calm down if others stay calm. When people are not calm it makes me more stressed like I feel like everyone is mad at me, so self injury is more likely. My husband gives me bear hugs but he is the only one allowed to do that, not anyone else. Restraints should be very last resort, and only by a trusted person. Again my husband is the only person allowed, not anyone else.
Also lots time self-injury is a communication of frustration. I have self-injured trying to get past a password before, so try trouble shoot and figure out of something is blocking access to an activity the person is trying to do. Try make activities accessible so there are less frustrations.
From my personal experience, I believe that [self-injury] is similar to addiction. These actions provide a degree of stimulation that triggers the release of certain hormones that calm us. We feel like we cannot calm down without doing this. I believe the inhibitory pathways of autistic nervous systems don't work well. Normally, these hormones can be released with moderate arousal. But we cannot get there without major arousal. Paradoxically, these actions are an attempt to engage our parasympathetic nervous system. 
It really helped me to think of it this way. It explains why I avoid arousal in the first place and then struggle to deal with it when over stimulated. I am also learning to tolerate the overstimulation with relaxation exercises because the stress and arousal hormones do eventually metabolize and wear off. This keeps me on a more even keel.
Alexandra Forshaw
There are a number of reason why someone might self injure. For me it’s a coping mechanism in situations where I feel overwhelmed by sensations, emotions and thoughts running around my head. I feel desperate for anything that will relieve what I’m feeling, and provide me with a single point of focus to bring clarity. To cut through the noise in my head takes something intense, and the physical pain of injuring myself achieves that, giving me one thing to concentrate my attention on and drowning out the other noise. 
I know it’s not ideal, that I’d be better off if I didn’t injure myself. I mitigate it by inflicting injuries on a part of me where I’m unlikely to cause serious damage, and by ensuring I do it with clean implements: if you have to do it it’s important to do it as safely as possible. What doesn’t work is trying to prevent me self injuring at all: without the coping mechanism I end up in meltdown where I’m no longer in full control and much more likely to cause myself serious injuries. The best I can do is deflect the urge, the compulsion, into the least harmful action that will provide the intense physical sensation that I need. 
Re: self harming in this pandemic, um, I’m really glad that I stocked up on bandaids before all this went down. I’m learning that my mom takes bloodstains way more seriously than I do so I have to be careful. Outdoor walks help. Can’t pet dogs, doesn’t help. Any pain relief helps. I’m upping a med tomorrow that should help with pain and anxiety. My doctors have said take all the meds you want it’s all fine until this is over. I hate meds but what can you do. OCD sucks. My speech has gone way down. I don’t have anything good to add except this is an unprecedented event which you of course know. 
I really miss swimming. I wonder if they’ve emptied the pools. That’d be weird. I have so many bandaids on. I’m using Epsom salts and Neosporin because I know avoiding an infection is paramount. Maybe there isn’t anything you can do to get rid of the self harm for now you just have to make sure that whatever you do doesn’t require seeing a doctor. My psychiatrist office is closed which is so stupid, no telehealth, nothing. You leave a message and they get back to you in a day or two. 
And then I feel bad when people compare it to Anne Frank and how good she was, or how our grandparents did all this stuff in WWII. And when I asked my uncle if this was like WWII he was wicked insulted.

I’ve spent my entire life learning social rules and suddenly every single one of them is wrong. Zoom etiquette isn’t in person meeting etiquette. Manners that I memorized are all wrong. And I don’t learn stuff any faster than I did when I was younger. It’s not any easier. It’s hell. But then I feel guilty because I have so much privilege who am I to complain?
Some of our community members had advice about stressors non-autistic people might not be perceiving right now.

Jeff from SpectrumDisordered
Factors neurotypical people may not perceive is stress from accessing equivalent medical care of we need it. We are watching triage protocols go up that either list "quality of life" as a criteria (and many medical professionals presume intellectual and developmental disabilities (IDD) mean we automatically have lives not worth living because ableism and this they declare us having poor QOL and deny us care), or specifically and explicitly placing people that need support in their daily lives lower on the preference list if COVID-19 treatment capacity is exceeded. Our lives have as much value as everyone else's and us having an IDD does NOT affect our survivability!!!! 
What is helping:  A schedule is helping. Maintaining a sense of routine and order with new experiences!
We also talked with parents about how they are supporting their autistic loved ones right now, and asked after any advice they'd like to give.

Elaine Park
The autistic person in my life is a highly verbal, very aware, moderately independent young adult, so my opinions are limited to this experience, but here is what I have: 
Keep your home life as normal as you can. Stick to your routines and encourage your person, as much as possible, to stick to theirs. Try not to get in the way of the things they do to manage their anxiety, as long as it’s not too destructive. My person uses video games to manage their anxiety, so I try to leave them alone with this. At the same time, fresh air and exercise are also important to staying sane, literally, so I also encourage them to go outside when it’s safe to do so, e.g. in the evening when fewer people are out and about. 
In general, as always during times of stress, it’s important to remember that everyone’s resilience and executive functioning skills are crumbling. You have to be intentional about taking care of yourself, so you can take care of others. Allow yourself as many calming measures as you can, whether it’s digging in the garden, a 5 o’clock cocktail, or setting up a FaceTime conclave with your friends. 
This probably should have come first, because it’s the most important: default to compassion as much as you can for person and for yourself. Picture the kindest person you know and pretend that’s you. And remember, this won’t last forever.
Martine Meijers
After a week of struggling and juggling our kindergardener Mats, 1 on 1 support for non-speaking Hugo, a sick Husband and my job, I have found this helpful:
  • Most important is comfort. Is everybody somewhat comfortable? No? We deal with that first and foremost. Even if that means a second morning bath, dancing instead of working, just hanging with an iPad for an extra hour or whatever.
  • Letting go of big expectations regarding school work and my own work. If I get either kids to do something school related for 1-1.5 hours a day: Yay me! If that school work is making a puzzle or baking cookies while reading, measuring and doing numbers instead of a work sheet: double yay!
  • If I work half my normal hours I’m an Olympian .;-)
  • As to AAC/non-speaking supports: Our living room is a pictogram heaven, including a core word of the week.
  • And last but not least: I am allowed to feel overwhelmed. And when I do I am allowed to sit down and just let everyone and everything be, and read silly romance stories on my e-reader (accounting for the kids being safe of course) until I feel a little better.
What can I offer to fellow parents who are facing this unprecedented time in their lives as caregivers? 
We are already getting hit with a firehose of suggestions and advice. “Keep to a schedule” and “provide structure” but “go ahead and break the rules.” Home is now “school,” but it’s okay to “unschool.” Go outside but observe strict codes of conduct. Stay inside, but be careful of...everything. 
I hate to add to the avalanche. There isn’t much that can make this easier. 
We all have to find more patience than we dreamed possible, more love and understanding than we knew we had to give. And yet there’s one more thing.
Don’t rely on shortcuts and dangle rewards to get through the days. Keep faith and respect with your child. If you tell lies to create expediency and produce treats to misdirect difficult experiences, you betray your child’s trust. The short term gain of cutting a corner with a cookie comes with trouble down the road. No one wants to be manipulated. We remember when we fell for it. Whether we despise ourselves for being bought or the other person for purchasing us cheap, or both, it feels bad later. 
So stay home. Stay safe. And stay trustworthy. It is the best way to be the haven your child needs.