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)
youtu.be/MJ8eeC-tVD4


Autism and the Corona virus (Dr. Peter Vermeulen)
petervermeulenblog.wordpress.com/2020/03/16/autism-and-the-corona-virus-20-tips

COVID-19: Advice and resources for autistic people during the pandemic (ASIAM.ie)
asiam.ie/autism-and-covid19-healthcare-information

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

The "Now, Next, Later" autistic-specific planning strategy (Jamie and Lion)
twitter.com/spacedoutsmiles/status/1241518988045230084?s=20

Thoughts from a Quarantined Autistic (Autistically Alex)
autisticallyalex.com/2020/03/20/quarantined-autistic

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:
mailchi.mp/arcanet/coronavirus-info-from-your-regional-center

Coronavirus (COVID-19) Information (CDC)
www.cdc.gov/coronavirus/2019-ncov/index.html

The COVID Tracking Project 
covidtracking.com

How the Virus Got Out (New York Times)
www.nytimes.com/interactive/2020/03/22/world/coronavirus-spread.html

World Health Organization, including daily updates:
www.who.int/emergencies/diseases/novel-coronavirus-2019


Practical Advice and Resources


5 ways to improve hospital experiences for autistic adults (AASPIRE)
vimeo.com/403152688

Automated Daily Check in Call for People Living Alone (I Am Fine)
dailycall.iamfine.com

COVID-19 Communication Rights Toolkit (Communication First)
communicationfirst.org/covid-19

COVID-19-Specific advice for managing stress and anxiety (CDC)
www.cdc.gov/coronavirus/2019-ncov/prepare/managing-stress-anxiety.html

Determining Circles of Support
tinyurl.com/DisabilityCirclesOfSupport

Empty Grocery Shelves Are Alarming, But They're Not Permanent (NPR)
www.npr.org/2020/03/18/817920400/empty-grocery-shelves-are-alarming-but-theyre-not-permanent

Emergency Checklists Form
tinyurl.com/DisabilityEmergencyChecklist

Emergency Plan Form
tinyurl.com/DisabilityEmergencyPlan

How to Clean Your Home for Coronavirus (New York Times)
www.nytimes.com/2020/03/18/world/clean-home-coronavirus.html

How to Make a No-Sew Face Mask (Japanese Creations)blog.japanesecreations.com/no-sew-face-mask-with-handkerchief-and-hair-tie

How to Make Gel Hand Sanitizer (WikiHow)
www.wikihow.com/Make-Gel-Alcohol-Hand-Sanitizer

How to safely grocery shop during COVID19 times (Dr. Jeffrey VanWingen) 
youtu.be/sjDuwc9KBps

How You Should Get Food During the Pandemic (The Atlantic)
www.theatlantic.com/health/archive/2020/03/coronavirus-how-get-food-safely/608008/

My Health Passport Form
tinyurl.com/HealthPassport

Practical Do's and Don'ts about pets, sex, grocery handling, etc. (Mercury News)
www.mercurynews.com/2020/03/27/coronavirus-q-a-part-3-is-hiking-ok-is-my-newspaper-infected-what-about-sex/

Understanding Competing Accessibility Needs (Brooke Winters, TPGA)
www.thinkingautismguide.com/2018/10/acknowledging-and-accepting-competing.html


Entertainment


If I Wrote a Coronavirus Episode (Vulture)
www.vulture.com/2020/04/if-i-wrote-a-coronavirus-episode.html
  
Machines of BART coloring sheets; click on the illustrations (Bay Area Rapid Transit)
https://www.bart.gov/news/specials/machines

Magical Bridge's FREE virtual concerts and sing-a-longs series
magicalbridge.org/virtual-magical-bridge-concerts-sing-a-longs-and-much-more-on-the-magical-bridge-facebook-page

Netflix Party Browser: synchronized remote Netflix viewing (Chrome Browser Extension)
tinyurl.com/PartyOnNetflix

Science Fiction Short Stories of Hope and Happiness, Resistance and Resilience (curated by Maria Haskins at Strange Horizons)
strangehorizons.com/non-fiction/short-fiction-treasures-quarterly-short-fiction-round-up/

Sir Patrick Stewart reads Shakespearean Sonnets


Advocacy and Rights Resources


Coronavirus: How These Disabled Activists Are Taking Matters Into Their Own (Sanitized) Hands (KQED)
www.kqed.org/news/11806414/coronavirus-how-these-disabled-activists-are-taking-matters-into-their-own-sanitized-hands

Council of Parent Attorneys and Advocates (COPAA)
www.copaa.org

COVID-19 Advocacy and Resources (DREDF)
dredf.org/covid-19-advocacy-and-resources

COVID-19 Resources (Center for Public Representation)
www.centerforpublicrep.org/covid-19

COVID-19 Resources (The Arc)
thearc.org/covid

Disability Demands
www.disabilitydemands.org

Doctors Should Not Abandon the Principle of Nondiscrimination (Ari Ne'eman, New York Times)
www.nytimes.com/2020/03/23/opinion/coronavirus-ventilators-triage-disability.html

How People of Color Can Advocate for Themselves During Emergency Room Visits (ZORA)
zora.medium.com/how-to-advocate-for-yourself-during-an-emergency-room-visit-23e9ca20549d

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)
dredf.org/the-illegality-of-medical-rationing-on-the-basis-of-disability


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":
stories.audible.com/start-listen

California State Parks Virtual Field Trips
ports.parks.ca.gov

California Academy of Sciences At Home
www.calacademy.org/academy-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):
www.amazingeducationalresources.com

Free live online classes to support public school families affected by closures in the wake of COVID-19 (Outschool)
blog.outschool.com/free-online-classes-for-public-school-students-affected-by-closures

How Students Around The World Are Learning and Staying Positive (UNICEF)
www.voicesofyouth.org/campaign/studying-home-due-coronavirus-how-young-people-around-world-are-keeping-their-mood

How Stuff Works
howstuffworks.com

Learn ASL (American Sign Language) Online, from Meriah Nichols
www.meriahnichols.com/learn-asl-online

NASA Kids Club
nasa.gov/kidsclub

PV Story Time: Children's Books Read Aloud
www.youtube.com/channel/UCzKJ21dDMsbY7IB7apLZPZQ

Storyline Online: Children's books read by celebrities
www.storylineonline.net


Donations, Relief, and Supports 


Blood Donation FAQ (Stanford Blood Centers)

COVID-19 Solidarity Response Fund (WHO)
covid19responsefund.org

Domestic Violence Hotline 
www.thehotline.org

Emergency Funds for Freelancers, Creatives Losing Income During Coronavirus (KQED)
www.kqed.org/arts/13876893/emergency-funds-for-freelancers-creatives-losing-income-during-coronavirus

Food Relief and Donations (Boys and Girls Club)
www.bgca.org/news-stories/2020/March/BGCs-nationwide-feed-in-need-communities-during-COVID-19-crisis

Food Pantries and COVID-19 (Kelly's Kitchen)
www.kellys-kitchen.org/post/food-pantries-and-coronavirus

Relief Funds for Undocumented Workers in California
tinyurl.com/CAUndocumentedRelief

Thursday, April 2, 2020

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

IMG_0225
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.
Anonymous
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. 
Anonymous
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.
Anonymous
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.

Friday, March 27, 2020

Your Lax Social Distancing Is Stressing Out Autistic People


Image © Shannon Des Roches Rosa
[image: Photo of six people, seen from behind looking
at downtown San Francisco from atop Twin Peaks.]
Now that every rule of social engagement we’ve painstakingly tried to learn has been turned upside down by social distancing, it’s not just our routines that are disrupted: It’s our whole concept of the importance of Rules.

I’ve heard many parents say their autistic kids are “rule-followers” and bitten my tongue wanting to ask if they thought it’s because we’re naturally rigid, or because we’ve been undergoing compliance training for as long as we can remember. Regardless of the origin, many of us cling desperately to whichever skills that get us approval rather than admonishment. Not always a bad thing, many rules certainly do make sense in appropriate context. All we-were-made-for-this jokes aside, social distancing is a stark example of a good rule in this context.

Follow this rule, and more people live; ignore it, and more people die. So here I am, the very model of a rigid, autistic rule follower, thrown into this situation where the rules are pretty much reversed, but still thinking I’ll be OK, because at least these rules are beautifully clear: Stay six feet away from others. What could be plainer? Then I go outside, and some seemingly random groups of people are following the rule and some aren’t. 

That’s what has me most on the verge of a meltdown every time I have to poke my head out of the house. I can stay inside. I can go outside, and do my best to keep six feet from everyone else, though that’s difficult on Brooklyn streets and even in our comparatively crowded green spaces. What I cannot bear is the sight of all these seemingly ordinary, sensible people flouting life-or-death rules. When I get home, and calm down enough for my spoken or written language to fully return, I can process my confusion and fury with complaints. My son can’t, though. 

I’m not sure people who haven’t spent their lives adhering to particularly rigid rules, for whatever reason, can fully understand how horrible this is for autistics.

Thursday, March 19, 2020

Autistic in the Pandemic: A Call to Action

reach
Photo © Katie | Flickr / Creative Commons
[image:Black-and-white photo of a person wearing a hoodie and pants,
seen from behind near deciduous trees, reaching up and out to the sky.]
Maxfield Sparrow
unstrangemind.com

In the recent WWI movie, 1917, there’s a scene where the reluctant hero encounters a woman hiding behind enemy lines, trying to shush a starving baby. The baby isn’t hers so her body is not equipped to feed it. Lance Corporal Schofield had stopped to fill his empty canteen with milk—the only fluid he could find that was safe to drink—earlier that day. Although we know almost nothing about his life at that point in the film, his words and actions with the baby suggest that Schofield is a father, himself. He gives the milk to the woman and seems grateful to be able to do so.

There is a lesson here. None of us are as helpless as many of you may feel right now. We all have something seemingly trivial (or even looked down upon by mainstream society) that will be life-saving for others. I’ve seen a lot of Autists the last few days jesting about having spent their entire lives preparing for social distancing. I want to bring this out of the realm of jokes and validate it: being Autistic gives many of us certain advantages in these days of COVID-19 and it’s time to own that and talk about our possible roles in this historic time.

The jokes started around the similarities among social distancing, self-isolation, and social exclusion.

  • Social exclusion is something far too many of us are familiar with. I wrote about this topic a couple of years ago when I was reviewing the thin slice autism studies. So many of us spent our childhoods as outcasts. Many of us still feel that way most of the time when we’re outside Autistic space.
  • Self-isolation is a common response to abuse and trauma. I’m guessing most of us who have ever been in psychotherapy have talked about self-isolation with our therapists. While therapists are trained to encourage us to stop isolating and put ourselves out there, I have a personal hypothesis that we have to be ready to put ourselves out there and we have to have access to a community that will truly support us once we’re out there. Otherwise, self-isolation is a healthy response to an unhealthy world and shouldn’t be stripped away from us prematurely.
  • Social distancing is what many cities and towns all over the world are practicing right now to try to slow the spread of COVID-19 and lower the strain on our medical system. While the phrase has the word “social” in it, it goes beyond socializing. To socialize is to interact with other people in a friendly way, but social just means “of society,” So every interaction with another human is social, even if we aren’t socializing.

No matter how introverted a person is, no matter how much social exclusion they’ve experienced, no matter how much time they’ve spent self-isolating, none of us were truly ready for social distancing. I spend so much time closed away in my room that when I didn’t leave it for five days last month, during a fever, my housemates didn’t even realize I was sick. I’m a champion self-isolator, to the point that I’m now sarcastically saying, “oh, there’s a name for my lifestyle! Quarantine.” But I admit I’m having struggles just with the thought that I will run out of food in about a week to a week and a half, and have to go out into an uncertain world where people have touched everything in the grocery store and maybe won’t be willing to stay ten feet away from me, no matter how hard I am trying to stay ten feet away from them.

But even though saying we Autists have already spent our lives in quarantine is often an exaggeration, it is very true that we are more prepared, mentally than the average person. We have already developed our coping tools for loneliness and isolation. Many of us have been forced to become extremely emotionally self-sustaining after years of bullying or exclusion. Now is our time to shine! What I’d like you to consider doing: write a poem, letter, essay, paragraph, sentence, bullet list or record a video or audio statement or create a work of art or music or photography—in some way express yourself to others on this theme: how I have learned to take care of myself when I’m alone.

Some of you will create work that talks about how much happier you feel alone, how much safer. You will help others by teaching them to find the good in being alone, even if they are currently forced into it (just as many of us were forced into being alone when no one would eat lunch with us or when the only way they wanted to play during recess was to kick us instead of the ball.) You will teach them to think about social distancing in terms of safety more than deprivation.

Some of you will create work that talks about the desperation you have felt all your life at being unable to connect with other people. You will help others by letting them feel less alone. When they see their current feelings reflected in your life experiences they will understand that this situation might be totally novel for them but it is part of the full range of human experiences and they will paradoxically feel less lonely by realizing that they are not the only one who feels that way. Others have been feeling that way for a long time before this pandemic hit. Perhaps in their emotional solidarity, they will grow in understanding and work harder to include us in the future.

Some of you will be able to offer concrete methods you have used all your life to cope with social cruelty that left you alone and lonely. People will be able to try those methods, those actions, those ways of thinking and see if it helps them, too. Be patient with them - coping with being alone is a skill like any other. We have had more chances to practice it, just as people with majority neurotypes have had more chances than us to practice socialization. Now we are the experts and they are the ones who are deficient in a needed skill. We can help them and we can do it with more kindness and compassion than many of us experienced at the hands of “helping” professionals in the past. So many of us are experts at loving without touching.

There is another area where we tend to really shine yet are often judged or underestimated: many of us excel at collecting information, organizing it, remembering everything down to the smallest detail. I know it’s something I can’t help. My brain just collects data. This afternoon, a housemate needed a jump start. After reminding them of social distancing, I helped them get their car started and it felt really good to be able to help them. They asked if I were being so stringent about social distancing because I’m on testosterone and mentioned their transmasculine friends are extra concerned about the risk.

I was able to tell them that reports are indicating that more men are dying from COVID-19 than women, and that even the regular flu often hits men harder and more men die (our cultural jokes about “man flu” have been debunked by science) because of something about the immune response to these respiratory illnesses in a testosterone-based body compared to an estrogen-based body. This doesn’t put all testosterone-dominant bodies into an extra risk category, but maybe people in their first years of transition are right to take extra distancing precautions because being testosterone-dominant is still such a new experience that our bodies might not have adjusted well. The bottom line is that we don’t have solid scientific answers yet—we don’t have enough data on medical transition, we don’t have enough data on COVID-19, we just don’t know. There is so much we don’t know yet.

The point of this is not to stir fear in you if you live in a testosterone-dominant body, but rather to illustrate all the little details I was able to recall at the moment because my brain likes to collect and organize data that is important to me. I learned about the research into the “man flu” phenomenon a year or more ago and remembered it when I learned that COVID-19 has taken more men than women. If it weren’t for studies showing diminished resistance to regular flu, I would automatically assume more men have died from COVID-19 because of the social expectation that men will go out into the world and protect others, thus exposing them to the virus more. The bottom line is that we don’t have enough information so we have to protect everybody right now. I am very interested in science and medicine so those sorts of facts get added to my mental collection all the time.

You probably have something similar in your life, whether it’s history, rocks, details of your fandoms, herbs, engines, knitting stitches, or whatever. I’ve met Autists who knew the entire history of all the national grocery stores’ foundings and mergers. I know one person who can tell you what brand any toilet is without getting close enough to look at the mark on it. We tend to have niche interests and have them turned up to eleven. Many of us end up interested in how bodies work, the science of medicine, social engineering, statistics, and other topics that are helpful to know during a pandemic.

I’m guessing, if you’re glued to the scientific news right now, listening to the WHO’s daily broadcasts, maybe even creating algorithms and graphs like I am, you’ve had someone tell you you should stop. I am here to say: if you do not feel that it is having a negative impact on your mental health, keep going! I know I feel more grounded and calm when I allow my brain to do what it naturally wants to do. Graphing the daily death count might make someone else hysterical, but it helps me feel more in control because I know and can see what’s happening. It’s like the difference between being in a box and wondering what’s outside and being in a room with a window I can just look through to see what’s out there. Knowing as much as I can know helps me stay grounded.

If you are okay with learning as much as you can about what’s happening right now, don’t let others bully or discourage you from pursuing that drive. If you collect the information and are careful to consider your sources so that you’re only getting the most solid data possible, that is the milk in your canteen. You may eventually come across someone who, for example, really needs to know that scientists are arguing about whether ibuprofen is safe or not so they can make an informed choice about whether they will take ibuprofen or switch to a different medication if they can. And if you are a super-smeller like me, you can instantly know when social distancing has been violated: if you can smell their breath, they’re too close! (And yes, I can smell someone’s breath from five feet away.)

I want you to use all your self-soothing skills to stay calm because flattening the curve so that we can all save lives is not something we can do in two weeks. This is a marathon, not a sprint, so take care of your health and do whatever things work best for you to remain calm and grounded. You have an important role to play in protecting everyone. Communicate to the world and share your insights and skills with those less equipped to handle experiences similar to what we’ve lived with for years or decades. Collect the information your brain is hungry for and be ready to communicate it to others when they might need it (while remembering that anyone you talk to may be on the edge of panic, so be gentle with them and try not to “make them drink from the firehose” of an Autistic infodump—yes, I know, not easy. I’m a classic infodumper, myself).

We Autists have important skills and life experiences that can serve the rest of the world in this time of pandemic. We can help others without endangering ourselves and maybe some of the people we help will remember once this danger has passed: Autistic people are helpful and have deep understanding of things that non-autistic people need. Our society needs all kinds of people with all kinds of neurotypes. We can complement one another when we’re able to work together and respect each others’ differences.

Too often, people have shut us out of everyday life. Maybe learning how useful many of us can be in stressful times will help them be more understanding of us in the stressful world of ordinary life. If we offer them our canteen of milk now, perhaps we can all come out of this as better allies to one another.

Finally, if you can’t or don’t want to communicate through words, art, etc. and you aren’t doing well with hearing the science or news, don’t feel guilty or tell yourself you can’t do anything to help. Taking care of what you need is helping. Staying home or going for walks that maintain distance between you and others is helping. Doing the things that keep you happy and focused is helping. We are all in this together and whatever response you have to our collective need to protect ourselves and others is not wrong. Your emotions are not wrong. Whether you’re fearful, calm, or alternating between both, that’s valid. In a pandemic, every person who does nothing more than sit up in bed and watch Netflix all day is a hero. We can all be heroes, no matter who we are or what our status in life.

If you do nothing else during these times of social distancing, remind yourself that you are a hero, you are worthy to live and thrive, to love and be loved. You are valid, you matter. Please stay safe and remember that, so long as you aren’t out looting,  taking care of yourself during a pandemic is an act of love for the world as much as for yourself. Taking care of yourself is taking care of everyone. From that perspective, even sitting in bed binging Netflix is an act of love. Even doing nothing can be the canteen of milk we offer our wounded world.

Thursday, March 12, 2020

“I think we all need people in our lives who share our identities”: The Power of Autistic Mentorship

Photo courtesy Anne Borden
[image: Two white people: A boy with medium-short dark blond hair, and a
woman with short dark brown hair, posing for the camera.
They are sitting on a wooden bench next to a large bush.]
Anne Borden and Raya Shields live in Toronto, where Raya is an autistic mentor to Anne’s son Baxter. Both Anne and Raya are members of Autistics for Autistics (A4A), an autistic self-advocacy organization. In this conversation, they discuss autistic mentorship: what it is, why it’s important, and how we can forge new approaches to autism through autistic-led and directed projects.

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Anne: Raya, how would you describe what you do? Is it autistic mentorship, or what term would you use?

Raya: I refer to myself as a mentor and to the work that I do with children and young people as mentorship. I also have my Bachelor of Arts in Child and Youth Care from Ryerson University, and so am also a child and youth care worker, and sometimes refer to my work in that way. I am an autistic adult working with autistic and otherwise neurodivergent children and young people, so I think it makes sense to refer to what I do with children and youth as autistic mentorship.

In recent years, I have been more open about the fact that I am autistic in the work that I do. Previously, I kept this information private for fear of families not wanting me to work with their child, knowing that I am autistic. I’ve noticed a shift recently with parents seeming to be open in a way that they were not previously (in my experience) to the prospect of having an autistic adult involved in their child’s life. That makes me feel hopeful about the future. I’ve had parents reach out to me because they know that I am autistic, and that feels really amazing.

Anne: Do you feel like a few years ago it was riskier to be open about being autistic, in the work you do?

Raya: Well, yes, in a way though I would say the risk is context-dependent. For example, I started peer mentoring when I was in high school. At that point in my life, parents knew I was neurodivergent (though not necessarily that I was autistic). Then the work I did with children gradually moved from the school and into the community when parents hired me to work with their child on weekends or after school. As I began to connect with parents interested in mentorship or support for their child outside of the school setting, I initially did not bring up the fact that I am autistic. People were contacting me because they heard from others that I ran social groups for neurodivergent (ND) youth, that I worked with children and teens one to one on life skills and particularly coaching ND teens on using the subway with more independence, and that I provided “respite.”

At that time (and to some extent now) I had this anxiety that if parents knew I was autistic, they wouldn’t trust me to do good work with their child. The irony is that I am good at what I do because I share their child’s neurology and can establish relationships that are child led, that respect autistic ways of communicating, and that (I hope) support children/youth in learning new skills in navigating a world that just isn’t built with autistic people in mind.

So I guess I’d say that when I first became involved in mentorship there was no need to disclose because everyone who attended my school was ND. Then after I graduated, I spent several years being afraid of disclosing my neurology because of ableism. The experiences of being told that being autistic was bad, that it made me less than human, had made me feel that masking and hiding the fact that I am autistic and ND was the only way I would be able to do the work I loved.

In the last three years or so I’ve had this wonderful experience of having a few families reach out to me because they knew I was autistic, and that was the reason that they wanted me to work with their child—and that has been so liberating. It felt like I was holding my breath for so many years when working with kids/youth, afraid that any tic, or stim, or the way I spoke, or misunderstanding figures of speech or knowing if someone was being funny or sarcastic, or not holding eye contact for the “right” amount of time—that just started melting away, and I could finally take a breath.

I mean, let go of the breath I was metaphorically holding!

Anne: I’m one of those parents who was looking for an autistic person, specifically, to hang out with my kid. Before my family met you, we went through a series of neurotypical (NT) babysitters and they had such a limited repertoire, like because my kid wasn't into reading Rainbow Fish or making Lego action figures they would just throw up their hands. Honestly, I felt like saying “good luck with life” to them because they didn’t seem to have much inclination to adapt at all. I was like, you really can’t line up crayons with a kid? That’s just too outside of your comfort zone??

Raya: Oh man, some of favourite moments spent with kids are ones where we do something like ride the subway to every stop and photograph each station or ride different elevators around the city. I would be very down to line up crayons.

Anne: Right? I remember there was this one babysitter…after she left one day, Bax said: “Why does Samantha go to the bathroom so much?” And we figured out she was going into the bathroom and texting…not doing her bit at all! And this was heartbreaking, and it was also very hard when [a babysitter] would just not show up, for example. I was mad at them for giving up, for being inflexible. I also just did not get why they couldn’t connect, when he was clearly reaching out and doing his best to make a connection with them. 

The funny thing is the stereotype of autistic people is we're rigid and inflexible, yet all these NT babysitters we tried were so rigid in their expectations. The person who could go with the flow was you. But it took some time to find you. It’s not like there’s a database of autistic mentors or babysitters, although there should be. 

Raya: As far as I know there is no database for finding autistic mentors here in Toronto although there are many, many respite services and directories that match a non-autistic respite worker to families. I think it’s basically word of mouth here, I can think of two or three other neurodivergent folks offering classes or programs or mentoring to disabled kids.

Anne: Yes, and this is in a city of three million, so clearly we need to build capacity and support! 

I wanted to ask you about how you deal with parent expectations. How do you negotiate, for example, when parents might have a different expectation than the client, than the kid themself?

Raya: I generally reframe what I am hearing from parents. So with many of the kids I work with, their parents have concerns about anxiety, frustration, socialization, executive functioning skills, and increasing a person’s independence. I might hear something like “we want you to help David* develop his social skills.” For me, I ask more questions about what the parents think they want and what the child wants and go from there.

For me the question is always: Is this about a critical life skill, is it a safety skill, or is this just an NT social expectation? I draw a lot from Ruti Regan’s blog “Real Social Skills” which offers insight into NT social expectations and the logic behind them that can be useful information for autistic folks to know, even if we may not relate that way.

I use a similar approach to the work I do, where my aim is to model ways to relate that are not overwhelming, and that respect autonomy. So parents might list different concerns they have about their child or goals they have for their child and I do my best to sift through the parents’ wishes and the child’s wishes and move forward in a way the respects the child’s autonomy while also reframing the issue the parent has presented.

I’ll give an example—many parents do tell me they want their child or teen to develop social skills. They often cite social anxiety, lack of confidence, difficulty tolerating a group environment, or difficulty with the NT conversation dynamic. What I offer is a group of likeminded peers—other autistic teens—who gather regularly and spend time in the community doing activities they mutually enjoy, and help to choose.

Through this supportive and accepting environment, where everyone is ND including myself, there are opportunities to navigate social dynamics on the person’s own terms and in a community of peers where it is ok to be autistic.

If parents say they are interested in their child or teen developing a better understanding of how to use public transit or money, I will co-design activities with the young person that address those skills while also respecting the young person’s own desires for how they will spend our time together. That might look like taking the subway each week to a different library if the kid is into DVDs or comics, or working with a young person on developing a budget to save up for a special event like Comic Con.

Many of the kids and teens I work with have a lot of anxiety and sometimes trauma from being in school environments where behaviorist-based programming was used. So it’s even more important that our work together is client-directed and that the young person has the opportunity to develop skills in a safe environment where their “no” will be respected and understood as a powerful way of communicating their boundaries.

Ultimately, what I hope young people get out of the mentorship experience are tools to advocate for themselves and their needs, pride in their autistic identity, and greater access to their communities.

Anne: What's your favourite thing about mentoring autistic kids? How does this experience impact you personally?

Raya: Hmmm, it’s hard to choose a favourite part! I love being able to get to know so many amazing autistic and ND kids and teens, and I especially love that I get to be part of their lives and see them grow and develop into amazing autistic young adults. I’ve been working with some of the youth I mentor for almost a decade, and to see someone you knew as a ten year old kid turn into an incredible twenty year old young man is really humbling.

I love getting to travel all over Toronto and exploring really niche and fascinating parts of the city—like a 113-year-old vintage birdcage elevator at the Gladstone Hotel, Toronto’s “secret” lower Bay Station and old railway cars, and looking for the albino squirrels in Trinity Bellwoods Park. Tomorrow I am going to an antique store with a kid to check out the city’s only Biblio-Mat (a vending machine filled with vintage books). I also love quiet moments of connection where I may be reading a book with a kid or watching an episode of Pablo where there is just this easy feeling of acceptance and mutual joy in being with someone who gets you.

I like that I can share my own niche interests with kids and they are so receptive to them and often look for ways to engage with me about them—for example I really love washing machines, especially vintage ones, and when I’m with kids I work with who know how happy these make me, they might point out coin laundromats or send me photos of washing machines they find when they go on trips. (So much for the myth that autistic people lack empathy!)

Anne: Bax does that! He makes little video laundro-tours for you when we’re out of town.

Raya: Yes…I like being able to support future autistic adults in a way I wish I was supported as a young (and initially misdiagnosed) autistic child. I think we all need people in our lives who share our identities and who understand what it is like to be neurodivergent in a world that isn’t always accommodating or friendly to autistic ways of being.

Anne: Mm-hmm.  I’m going to shift to policy for a second, because the work that you and other autistic mentors do—which is incredible—is also really marginalized by funders and I can’t leave that unsaid. 

For example—and this might be hard for some readers outside of Canada to believe—but the Government of Canada just funded half a million dollars for an “autism mentorship” program at an autism centre where none of the so-called mentors are autistic! They are neurotypical social workers or social work students. 

Now, how is that mentorship by any definition?  Why do you think the government and autism service agencies would call it “mentorship”?

Raya: I think it’s twofold. For one thing, the public image of the autistic person is as perpetually white, five years old, and male. I think there is an inability on the part of autism service agencies to imagine what autistic futures or what autistic adult lives might look like. When autism continues to be thought of in terms of young children and when autistic adults are infantilized, I don’t think autism service agencies are able to be creative, and to imagine a world where autistic adults are the ones who work with and guide autistic children.

I think following from this incredibly inflexible way of understanding autism, there is also a belief that autistic people need neurotypical mentors who will model neurotypical ways of relating and who will reinforce neurotypical social norms. The idea of an autistic adult working with an autistic child makes some autism “professionals” a little nervous, I think.

After all, traditional autism services often have a normalizing agenda; they want us to learn how to be more NT and it doesn’t occur to them that perhaps we would benefit most from learning how to move through this world as an autistic person from someone who has spent their whole life doing just that.

Anne: That’s right. And I think there are market forces involved. I don’t think most autism service providers actually want to share their space in the market with autistic people. When the autistic self-advocacy group I am in goes to speak somewhere, we get more questions and positive responses from attendees than the neurotypical “expert” presenters do. So there is obviously a demand for what we have to offer! But there is also an element of the established service providers worrying about their bottom line, seeing actually autistic individuals and organizations as competition.

Raya: Interesting. Yes I think that’s very true.

Anne: Because if they didn’t see us as competition, they would share the space with our organizations… and they do not. There is an entire economy operating around “autism,” and that’s why I think the neurodiversity movement is really more than a human rights movement, it’s also a market disrupter for the autism industry. Autism service agencies feel threatened by neurodiversity and especially autistic-led organizations So they try to co-opt ideas like mentorship, but without actually making any structural changes that might impact their existing business approach. They will even use terms like “neurodiversity” without being inclusive! It’s window dressing.

That leaves the question: how do we get the useful programs and services, such as true autistic mentorship, supported, funded, and integrated so that people in our community can access them? 

Raya: I honestly don’t know what the answer is. It would be great to compile some kind of database of autistic/ND support workers, mentors, tutors, teachers, and autistic-led programs so that the work we are doing in the community is more well-known. In Toronto I can think of three programs that are run by ND folks for ND kids and teens, but there is such a monopoly on private programs run by ABA therapists, private autism centres that run social skills groups…and then government funded “respite programs” that tend to be run out of ABA centres.

Anne: There are some workarounds with funding, sometimes…

Raya: But it doesn’t solve the larger problem that you bring up that autistic people are strategically and consistently shut out of spaces that are dominated by so-called autism “experts,” in part because perhaps they feel threatened or that their jobs are at stake.

I don’t have the answers to this important question but I think a point of entry is through the work of grassroots organizations like Autistics for Autistics and Autistics United Canada. Advocating for a seat at the table in the decisions that affect us and our community—even when it is hard won and tenuous—can give us a little influence, and perhaps open doors towards thinking differently about services and funding for autistic people and moving towards services that we want, that are actually needed, and that we choose and design for ourselves.

Anne: Amen.

What’s the biggest message or takeaway that you’d like your clients to get from your mentorship?

Raya: That it is ok to be autistic and that the autistic community is vibrant and welcoming and that they can find a safe harbour with autistic adults. That they are valued and respected and loved for who they are now and that they aren’t “too much” or “not enough” despite what they may experience in NT spaces.

Anne: Thank you for all you do, Raya!!

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*A fictional name; not the name of a real client.

Wednesday, March 11, 2020

Ridiculously Misguided Autism Research Strikes Again!

Ann Memmott
annsautism.blogspot.com

In the recent Lancet article The gut microbiome in neurological disorders by Cryan et al, confused researchers have mistaken reducing stomach pain for curing autism (yet again).

Now, autism researchers, when was the last time you had a hurty tum?

How was your behaviour?
Having an 'aha!' moment now?
Thank you.

If you want a hint of the joys within the Lancet paper: it references Tomova et al's 2015 paper Gastrointestinal microbiota in children with autism in Slovakia, which involves nine autistic children ages 2-9, in an unblinded study (meaning they knew which kids got the probiotic supplement) and parent reports of "behaviour."

Apparently after the treatment autistic children showed less "challenging behaviour" which led to the the supposition that "...appropriate... microbiota is required for normal social development." The problem is that autism isn't a behaviour, any more than being Deaf is a "behaviour."

The cited quest to 'reverse' autism. Just rude, really.
[image: Article screen capture, with a researcher claim on how probiotics
"could reverse many of the behavioural and gastrointestinal changes reported
in both human studies and animal models of autism spectrum disorder."] 
Here's Cryan in an earlier paper, The microbiome and childhood diseases: Focus on brain-gut axis, waving Medical Model of disease and disorder at us, and staking a claim in the theory that gut imbalance may manifest in childhood 'diseases' such as autism:

[image: Screen shot of the abstract of The microbiome and childhood diseases:
Focus on brain-gut axis, which claims autism is a "disease" that may manifest as
a result of perturbation in gastrointestinal microbiota.]

This is why participatory research, involving actually autistic people, is so important, for example the DART project findings re: autistic people having a different, not broken, social system. I wish the researchers would get out and meet some of us.

Now, if we want a good discussion about what we do to improve autistic lives, we do the following: We look at the results of big surveys like this one from Autistic Not Weird, asking autistic people with learning disabilities and limited speech if they want curing. And we find out that the answer, generally, is "no."

[image: Bar chart of survey results, in which more than 50% of non-speaking
autistic respondents and more than 59% of autistics with learning disabilities/ID
"strongly disagree" that if there was a cure for autism, they would take it.]
Second, we find ways to communicate with autistic people to ask what do want.  That's been done a lot. And autistic people want:

  • Better support for us and our families
  • Better understanding
  • Treatment for medical conditions such as epilepsy of course
  • Employment
  • Justice
  • A proper voice in our future

At the moment, we have an autism industry that has done little to nothing of the above list, leaving families floundering and individual almost entirely misunderstood and unsupported. I worry greatly for autistic children left in distress and pain, and offered only some faux cure.

So, if we can reduce stomach pain in any child, fabulous. Yes please. And for adults too.

But, when that discussion involves autism, researchers must invite autistic people to co-design, to co-lead on what outcomes they want.

Then, we don't get it wrong.

I will repeat what I've said for decades and believe utterly: That every single person, autistic or not, with a learning disability or not, is of equal value, equal worth, equally bringing their whole selves to the world. And equally deserving of a life of joy.

As a wise academic tutor said to us recently, the voice of autistic people is missing from nearly all autism research. In my view, as a result, we will continue to do nothing but waste time and money, leaving people in distress.

None of us want that.

Meantime, returning to Tomova's sample study of the nine autistic children:

  • No autistic voices were involved in the design, to our knowledge.
  • No-one bothered asking the children if the probiotics helped them—the study included only the parent's reports on "behaviour."
  • No-one did follow up, as far as I can see, so... we don't know if:
    • The parents just invented that their children were better behaved.
    • The parents imagined their children were better behaved.
    • The children felt so peculiar that they lost the ability to 'misbehave' as much
    • Dreadful things happened thereafter

In fact, asking the children anything at all is something most researchers have never thought of, let alone asking them in ways that they can cope with (environment, methods, timings, etc).

The study tells us precisely nothing about improving autistic quality of life. For all we know, the children could have had a worse quality of life afterwards.

The ethics of such "bring me autistic children—make them take this—observe them....now get rid of them" research is appalling.

And until researchers start involving autistic people in their research in meaningful ways, it will keep happening.

Saturday, March 7, 2020

How to Create Social Groups for Autistic Teens and Adults

Photo © Jonathan Nowak | Flickr / Creative Commons
[image: Adults of varied races sitting and standing around a gaming table.]

Jeff at Spectrum Disordered

I have a long history with successful autistic social groups. I started my first in 2006, and although I moved out of the area eight years ago, it remains thriving and still operates under the same general principles. I’ve started several groups in rural areas (where people tell me “there isn’t enough interested people to make this work”).

Putting a social group or club together doesn’t have to be super complex, but I think people need to have a clear sense of what it is and what it is not. If you are looking at setting up your own, I would offer the following guidelines.

The Social Group is the Speed Date

Speed Dating is a type of get-together in which people interested in finding a person to date gather. Attendees are introduced to each other (usually by pairing off and talking for a few minutes before rotating to introduce themselves to a new person) and then people mutually interested are given each other’s contact information.

The important concept of applying “speed dating” to a social group is not the formalized nature of the speed dating setup, but that the group is not the end-all social interaction. The point is to help people make natural and real friendships, not to occupy people’s time for a couple of hours a month. Not every autistic person is going to enjoy hanging out with every other person, so the goal is not that the group be everything to everyone, but that it is a way to facilitate people connecting and developing real friendships and to take those friendships and build on them outside of the group. One shows up to speed date not to have a bunch of 5-10 minute dates, but to find people they want to have REAL dates with and to give them an opportunity to meet, make the connection, and hopefully make arrangements to develop a real friendship. Same general idea here.

In our model, our typical social group took the form of a game night. People were encouraged to bring snacks and a game they were interested in playing with other people. A typical night would start with introductions, and people that brought games would introduce the game. People would peel off to play whatever game they wished, eat food and generally hang out. Apples to Apples and Jenga were two favorites that were accessible and got pulled out most nights. One night that stands out was most of the attendees playing through an impromptu Dungeons and Dragons module!

What would be very typical is that there would be larger groups playing some games, smaller groups playing others, and pairs engaged in a two person game here and there as well.

Autistic Owned and Led Space

A key caveat of social groups I set up is that having an autistic identity was a requirement to enter the space. The adult social group was strictly an autistic-only meeting.

We had our reasons. One key reason is once other people were allowed in, it stopped being our space, and our social group would become a social skills group, with people, well-meaning or no, feeling a need to “teach” us how (they thought) we should socialize. We would find this creep in in both subtle and VERY unsubtle ways.

With non-autistics present, conversations would become sterilized and censored. Very quickly we realized that a clear draw of our social group for many people was that our group was the sole opportunity they had in their lives to have a conversation that would not eventually end up getting reported to their parents, and that was more valuable than gold. I will never forget the one person who showed up to a social club meeting, and in his introduction blurted out “Is anyone a furry? I feel like I am and would love to talk about it with somebody but my parents can’t know.” The group that night took a quite unexpected direction!

Keeping secrets is a hallmark of true friendships.

All that said about the reasons for it being autistic-only space, a goal was for the group to be accessible to anybody that wanted to be there and for plenty of people, that would mean they needed support to be available. We settled on meeting at libraries, where we could take up meeting space for the group while still having a “hover zone.” Parents and supporters could mill around the library and still be a moment away if needed, while the person could have fully solo social interactions.

Another challenge of the “no neurotypicals allowed” policy is helping people through social anxiety of coming to a new place and meeting new people. We always reiterated that we would do anything we could feasibly do to help somebody feel comfortable in the space without their supporters immediately present and would often do things like meet the person and tour the room beforehand, meet in the room with a smaller segment of the social club regulars and other things to help break the ice. However, during club meetings, autistics only.

If the social group will not be as firm on having a “no NT” policy, then the group needs to have a clear understanding with non-autistic people that they are visitors in autistic space and need to act accordingly. Teen groups may require some degree of adult coordination, but leadership of the group should still be vested in autistic attendees.

Another dynamic of autistic-led space is it minimizes situations where participants are unwilling. Not every autistic person is looking to make friends, with other autistics or anyone else. Another firm rule we had is that people coming to our social group needed to have a clear desire to be there. We had neither the interest or the capacity to be a respite service for people without interest in hanging out for a few hours, or a group to “convince” people they should want more friends. However, if the lines between a social space and a “teaching” space get blurred, all the sudden you begin to find your social group is full of people that got forced to be there.

A Clear Line Between Adult and Teen Groups

When launching my first social group, I had the intent of it being for ages 18+, but didn’t feel I wanted to be super firm on that point. I soon found that I needed to paint a clear distinction and keep the space adult-only. The issue is related to the censorship issue above: people wanting to have conversations about adult topics, with not enough people in their life willing to have non-judgmental conversations about the same, and so conversations would drift into conversation about sexuality and relationships, drinking, licit and illicit drugs. These were excellent conversations and we appreciated that a benefit people found of the group was an opportunity to have conversations like this, but obviously not the type of conversations we would feel comfortable extending to minor children.

For teen groups, we tended to structure things with some degree of adult supervision and often more specific activities offered. We seemed to find that many teens were more interested in coming to do something identifiable rather than the primary objective being “social.” Minecraft, Pokemon play sessions, science demos, anything that seemed to match the interests of the people interested in attending. One of my favorites was making LED throwies!

Every Autistic Person (and Gender) Welcome

While people that attend a social group have zero obligation to be friends with everyone they meet as part of a group, they do have an obligation to make the group space friendly, welcoming and accommodating to all. It was very important to cultivate a culture that everybody was welcome and that the group would help police this.

establishing a culture of inclusion helps the group respect that everyone should have the opportunity to make friends—if you don’t personally like somebody, that is fine, you should feel no obligation to socialize outside the group. However, you do have an obligation to make sure they feel welcomed in the group itself, just as the group welcomed and included you.

Another consideration is that in any group like this, specific attention NEEDS to be paid to making sure that non cis autistic males also have a great experience in the group, and many female presenting autistic people simply do not have good social experiences hanging out with other autistics. You need to make sure that the experience of female-presenting attendees to your group is NOT a steady cavalcade of propositions to date (or to simply skip the dating and move on to something else).

An unfortunate reality of autistics and dating is that many autistics are quite motivated to date but do not feel they have enough opportunities. They often get reinforced to believe that the “perfect match” for them is another autistic person, so, they come to a social group and meet a person of the gender they are looking to date! And fifteen other cis autistics looking for dates also meet that person! And what results is many of those people make a pass, all/most are rebuffed, and some may get angry and direct their anger at the person rebuffing them. If you are the person at the center of all of this, do you come back to experience that with new (or the same) people next month?

We were not interested in standing in the way of a romantic/intimate relationship between mutually consenting group attendees, in fact I know of several relationships that started out of social groups I created. While we weren’t interested in barring people from exploring relationships with mutual interest, our general ground rules were to ask people to allow friendships to develop and then feel out relationship interest, and tried to make it very clear that asking somebody out that you only knew through the group had a VERY low chance of success. For people in a leadership role, we would also pay some closer attention to what interactions were going on in the room, and gently interceding if need be.

Consider an Online Component

A Facebook group or other social media component to the social group can help people feel more comfortable attending and connecting, can help further along relationships, and can help coordinate group activities. These groups often dwarf in-person attendance!

I’d recommend similar rules apply to online space: autistic identities only, group members need to show mutual respect, don’t harass people looking for dates.

Go With the Flow

More important than any specific format is that the group accommodates the wishes of the people involved. These loose guidelines worked generally well for groups I put together, but I would have been more than ready to scrap or tweak things that simply weren’t working for people interested in being a part. The goal is to make a comfortable environment for people to connect. Honestly, if setting up a new group in 2020, I’d probably seek more of an advocacy activism format to act as a the “social grease.”

A final note is that while I personally believe that a critical component of my autistic identity is staying socially connected with my “tribe,” autistic friendships should not be pursued or encouraged just as a matter of course. For many autistic people, a fulfilling social life probably has a mix of people and experiences involved, and those may or may not include other autistic people.

Friday, February 28, 2020

ASL for Autistics

Gallaudet ASL Sculpture
Photo © MrTinDC | Flickr / Creative Commons 
[image: Bronze sculpture of hands demonstrating American Sign Language,
in the visitor center at Gallaudet University.]

endever* corbin
anotherqueerautistic.wordpress.com

To preface: I am a hearing semiverbal autistic person who is studying American Sign Language (ASL) and using it as AAC (Augmentative and Alternative Communication). I want to talk about why ASL can be useful for some hearing autistic people. (Of course, it’s widely useful by d/Deaf/HoH people, despite oralists’ discouragement of sign languages—destroy this philosophy for all!)

However, before you consider my words please look into perspectives from actual d/Deaf people, whose experiences and culture should always be centered when discussing sign languages. Here are some links to start, and there’s a more thorough list at the bottom of this article.

Dr. Vicar’s ASL instructional videos
Rikki Poynter, deaf vlogger

Andrew Parsons, Deaf advocate

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I formally studied ASL as a teenager before I knew I was autistic, or knew that AAC was an actual thing. I enjoyed ASL much more than German I’d attempted for a year in high school. While coming home from evening community college ASL lessons, I found it difficult to switch back to listening and speaking; the car radio made even less sense to me than usual and it was hard to have a spoken English conversation about how class went. I only took four semesters of ASL back then, which isn’t very far at all towards fluency. I then proceeded to not practice for… sixteen years, except haphazard conversations here and there in customer service jobs where I encountered d/Deaf customers.

Then in 2017 I had a chance to review what ASL I knew: I participated in Autism Campus Inclusion, a self-advocacy program for autistic college students run by The Autistic Self-Advocacy Network (ASAN). It isn’t a sign language focused program, but it was held on the campus of Gallaudet, a private university for educating d/Deaf and HoH students. A fellow participant arranged ASL lessons for us, and I was excited and energized to be signing again.

I flirted with the idea of going back to classes, but was too attached to my Latin studies to make it happen right away. Finally, in spring 2018, I was in a class about autism with a hearing professor who happens to be fluent in ASL, and the ease of using sign language as AAC excited me once again. It’s so much quicker than typing for me! I contacted a Deaf professor about restarting my ASL studies, and after viewing a video of my expressive signing skills, he recommended I start back up with ASL 201. Unfortunately, I had to drop out after re-finishing 201 last fall; formal school just isn’t working for me right now. But the opportunity to get back into ASL was great—I found that my receptive (understanding signing) skills were the main thing that faded over time, whereas I managed to retain a lot of expressive skills over all those years of not practicing. ASL simply always felt like a natural way to communicate. Now I am approaching becoming more fluent via unschooling, with set goals for daily study and weekly vocab gain.

So why is ASL so useful for me? I’ll go into a few reasons here, with additional autistic perspectives from hearing ASL students Elizabeth and Zoë.

It’s certainly not true of all autistics, but my fine motor skills are significantly better than my oral motor skills—hand movements feel much less minute and subtle, compared to the mouth movements necessary to produce speech properly. There are so many times I have something to say and it’s easier to imagine producing it in signs than it is in speech. (To be clear, I still suck at ASL grammar and syntax, so I’m sure I’m not doing that aspect well yet, but the sheer movement is easier. One of my huge self-study goals is to improve on these aspects because it’s much more respectful to use proper ASL grammar than to stick to English word order.) Even through an interpreter it’s so much faster than typing, and of course it’s more versatile than pre-printed AAC cards or even a robust symbols-based AAC app.

Another benefit of learning ASL for me is that facial expressions are taught explicitly, unlike hearing neurotypical culture where we’re just expected to magically pick them up. Since I was not identified as autistic when I was young, no one else in my life was telling me to go home and practice facial expressions in the mirror—but my ASL professor did! I am certain that the amount of intentional control I now have over my facial muscles is due to ASL study. And I feel I can express emotion much more clearly in ASL than when using speech or my communication device, because facial expressions and body language are inherently tied to ASL’s very vocabulary and grammar, rather than being a supplementary, mysterious messaging system. Zoë says [1], “because ASL is an actual language, I can learn to use and read ASL facial expressions and body movements, which helps me build skills to use and read everyday ‘body language.’”

I, like many other autistic people, struggle with auditory processing: the function whereby our brains take in sound and try to make sense of it. As Elizabeth says [1], “auditory processing is fatiguing.” This can interfere with spoken conversations even for autistics with otherwise typical hearing, especially in environments where there is a lot of background noise. In busy coffeeshops, for example, I often don’t understand parts of what my friends are saying, and most song lyrics are lost on me until I’ve heard them 10+ times through. Sign language, however, provides visual input rather than auditory input, which for many of us may be an easier modality to process receptive language. Personally, I’m still trying to catch up on my receptive ASL skills, but it seems to help my understanding of spoken language even more than CART captioning (a live captioning service) if I am able to watch an ASL interpreter paired simultaneously with the spoken English. I have started requesting ASL interpreters for events and doctor’s appointments, and even though I’m not fluent in ASL yet, it’s really helpful as both an auditory processing aid as well as AAC.

Another feature of conversations in sign languages is that many of them might take place in spaces specifically dedicated to sign such as d/Deaf events and language classes, meaning that there may not be the level of conversational background noise that bothers those of us who are oversensitive to noise. Of course, d/Deaf spaces can be loud too, but we hearing autistic people can wear ear protection in those settings without missing any information.

Additionally, d/Deaf culture is typically more direct and straightforward about subjects that hearing allistic culture might consider off limits, which can mesh well with many autistic people’s natural inclinations. Interactions in sign languages can end up being less exhausting than spoken conversations if you’ve had the chance to learn other Deaf social norms deliberately rather than having to guess at hearing-world neurotypical norms. And as Elizabeth points out [1], learning ASL features “practice with back-and-forth communication to check understanding—this is something that’s been consistently hard for me in English, but with ASL I get to see a lot of examples of teachers and other more skilled signers checking in with less skilled people.”

There are some cons to balance all these pros I mention when it comes to sign languages for autistics, mostly consisting of caveats and conflicting access needs. I am lucky to have good fine motor skills, but many autistics struggle to match handshape and complex fine motor movements. Modulating and noticing/understanding facial expressions, even when taught explicitly, might still be incredibly difficult. A major part of proper ASL and Deaf etiquette is consistent eye contact—this can somewhat be faked by an autistic signer by staring at your communication partner’s nose or forehead, but it’s most respectful to maintain true eye contact to a greater extent than is comfortable for many autistic people. Our stims may distract other signers with extraneous movement, and we may process visual information too slowly to keep up with fluent signers.

Zoë points out [1] that at times “Deaf environments can sometimes be very loud… music may have a strong bass so you can feel it, which is great for Deaf people but not for me… conflicting sensory needs are something that exist.” All these conflicting access needs should be addressed as openly as possible, in situations where they affect conversation partners, and certainly some hearing autistic people may struggle with them so much that ASL is not a good option for them. And even for those of us who find sign languages useful for our own access needs, the lack of people who understand sign language in day to day life can limit our opportunities to use it as AAC and/or as support for auditory processing problems, just as it limits d/Deaf folks’ access to communication across settings. Even in d/Deaf spaces, autistic students may find that Deaf people can be very critical towards them or might think ASL should not be used as a communication method for anyone else.

It’s also incredibly important that we as hearing autistics are careful not to appropriate d/Deaf culture or fail to center d/Deaf experiences despite using a shared access tool. On that note, I’ll repeat that I hope you will click some of the links above and below in order to learn about ASL and Deaf culture from actual d/Deaf perspectives, rather than leaving off on the subject at just my writing. As hearing autistic signers we only have expertise on our experience as autistics, not on important linguistic features or cultural values in the d/Deaf community. Folks who want to learn ASL should seek out instruction from Deaf instructors, who can teach cultural nuances and a more thorough understanding of the language. And you can go to d/Deaf events, but “check the description to see whether they’re open to hearing people, and what level of skill is required” (Elizabeth) [1]. If you support an autistic person, consider asking them if they think learning sign language would be helpful for them, and if so help them seek out d/Deaf-led resources.

I am so grateful to the d/Deaf community for nurturing a language—in the face of horrific oralism and audism—that is helpful to me as an autistic person. ASL is invaluable to me as AAC and support for auditory processing issues, along with all the more detailed benefits above. The opportunities for cultural exchange I’ve had where both hearing autistics and allistic d/Deaf people have realized that we have a lot in common are precious to me, and I hope to find chances to learn from DeafAutistic people, because they have insight that neither individual group can access on our own. I think our communities have a lot to gain from working together to fight the ways speech, oralism, audism, and ableism are forced onto all of us, and learning to have those conversations in ASL is a privilege to me.

I hope you have learned from my experience how ASL can be useful for autistics, and that if you’re hearing you’ll continue to learn more alongside me about how we can be most respectful towards the d/Deaf community.

Here are the rest of the links I promised:

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[1]: Quotes from Elizabeth and Zoë (who requested they not be identified further) were pulled with permission from personal communication.

Gratitude to Abby and Mia for their thoughtful feedback as this article was developed.