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

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

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.


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!!


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

Wednesday, March 11, 2020

Ridiculously Misguided Autism Research Strikes Again!

Ann Memmott

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 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 people who are not cis autistic males also have a great experience in the group, as 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 by 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.