Friday, March 26, 2021

Getting the (Second) COVID-19 Vaccine While Autistic

COVID-19 immunizations begin
Photo © bcgovphotos | Creative Commons / Flickr
[image: Person with light skin and dark hair in a ponytail, wearing a blue
surgical face mask, at a desk with hand sanitizer and vaccination paraphernalia.
They are looking at someone off camera, and pointing to their right.]

By Kate

On Monday, March 15, I was lucky enough to receive my second dose of the Moderna COVID-19 vaccine. My experience in getting the first dose of the vaccine had gone pretty well, but I have never been an optimist or a pessimist. I am a realist. For me, the glass is not full or half empty. For me, the 16 ounce glass contains 8 ounces of 52° tap water from Concord. (And yes, that town is deliberately chosen, because I have serious opinions on the taste of various places tap water, and their tap water does not taste that good to me.)

I have heard and read that the second dose of the Moderna vaccine can be very difficult for some people and that the side effects can be quite hard to deal with for a day or two. I had hopes that I would not have to deal with bad side effects, but just in case, I prepared. I bought ginger ale, a sports drink, and crackers. I talked to my doctor about what painkillers to take. And most importantly, I arranged to stay with my mother, who has already been vaccinated, for a few days after I received the vaccine, just in case I needed help in taking care of myself.

And thus prepared, I returned to the same pharmacy where I had received my first dose to find that there was no line this time. They have now worked out all the kinks in the system, and efficiently scheduled and injected so that I had no wait. Except, of course I had a wait, because my fibromyalgia in my arms means that I needed the shot in my thigh. Despite the technician’s assurances from the last time that the notes in my chart would mean that my next dose would go smoothly, this new technician also felt the need to do about 15 minutes worth of research and talking to people before she was willing to inject me in my leg. However, just like last time, the research quickly assured her that it was okay, and after taking my temperature and swiping the spot with an alcohol wipe, I got the injection, and went to sit in the waiting area for 15 minutes.

It is so odd to me that almost exactly a full year after the stay-at-home orders started, a year that was harder than almost any other year of my life, a year that I honestly didn’t know if my friends, family and I would live through… that this tiny vial of chemicals could change my life so much. It was weird that the sky and the grass and the clouds all looked the same. I felt almost as if color should be brighter, as if music should be playing, balloons and confetti flying through the air. Instead there was just me, surrounded by Plexiglas and strangers, wondering why my emotions didn’t feel as momentous as I expected them to.

Still processing these feelings, I went to my mom's. That night, I was tired and I had a headache, but I am often tired and I always have a headache, so that was not a surprise. The injection site was very sore, and I could not lie down on that side, but it was totally bearable—so far. 

The next day I woke up at 5 AM in a lot of pain. My headache felt different than my normal headache. My skin felt as if it was on fire, but it did not look any different than it usually does. I got up and had breakfast and took some Tylenol. I continued to feel worse as the day went on. By that afternoon my fever reached 101°, and I could not read or watch TV due to the pain. I did not want to eat because of the nausea, but I forced myself to keep drinking. I was utterly miserable, cold one minute, hot the next. I decided that I hated the Moderna vaccine, but then felt very guilty because I knew it was such a good thing.

It was sort of like being run over by an ice cream truck. Being run over is awful, but ice cream is wonderful, and the truck full of ice cream to give to everyone is even more wonderful. I had a lot of weird thoughts like this. I kept looking up the side effects, and everything I read said that they would pass. I held onto that fact, took more Tylenol, and reminded myself over and over about how lucky and fortunate I was, because this vaccine would not only save my life but by preventing me from transmitting Covid to others, it would save their lives, too. I tried not to complain. I failed. Luckily, my mom did not mind.

I lay on the couch and I listened to my mom talk to various relatives on the phone and came to the weird realization that just because your kids are in their 30s and 40s, does not mean that your parents spend any less time talking about you to other people. My mom kept telling me to drink water to "flush the fever/virus out." I said that sure, with a normal fever you wanted to do that, but what if I drank too much and I just peed the vaccine out instead of the fever? We went back and forth about this for a while, and later I found out that we were both wrong. You should drink water during a fever, to keep hydrated and to keep your body healthy, but you can’t pee out anything like a virus or a vaccine, because those are in your blood.

I was not hungry, but I forced myself to eat crackers, cheese and fruit. I went to bed, hoping that I would wake up the next day feeling better, and I did! I felt much better. My fever was only 99.7°, my head was clear, and my pain levels were much, much more manageable. I went home. By that evening, my fever was gone completely, even without Tylenol. The injection site on my leg is now the size of my fist, hard, red, and sore, and from my experience with the first injection I know that will last for a couple weeks. My headache is still slightly worse than usual, but my usual energy has returned.

From the accounts that I’ve heard and read, my experience with the second dose of Moderna was slightly atypical in that I did not have the extreme fatigue that many people have. I just had a lot of pain. My nausea was also never that bad. I was also lucky in the fact that I am one of those autistic people who, when I get a high enough fever, I feel very chatty and sociable—so even though my body felt like a pile of crud, my mind was always able to carry on a conversation and be aware of the fact that I was lucky, and that this vaccine would do very good things for me.

I actually think that autistic people are probably better equipped to deal with vaccine side effects than  other people. This is because we are used to our bodies not doing what we want them to do. We are used to getting the super rare side effects, we are used to needing more rest and downtime, and many of us are very used to dealing with pain. I was not expecting to have such a high fever, or for my entire body to feel like it was on fire, but as a realist I accepted that these side effects were not uncommon and I accepted the scientific and anecdotal evidence that said that they would go away. Autistic bodies may be weird, but they are not that weird. Even though it felt like I would be in agony forever on Tuesday afternoon, I knew that was just a result of my high pain levels, and that there was zero chance of that happening.

I am so, so glad that I got this vaccine. I am so excited to do things again. I am not going to any festivals, or even restaurants for that matter, but I am having an in-person doctor visit next week, which after a year of almost exclusively tele-visits seems like a somewhat festive occasion. My mom and I are also planning on traveling two whole hours away to see my niblings at some point the spring. I have already started planning what I will bring them to re-confirm my place as the Best Aunt Ever.

And so, as the old saying goes, the pandemic began its downward descent for me not with a bang, but with a silent injection. Even as it continues around the world, I know that my chances of dying from it are now almost nonexistent, and this relieves my anxiety to an enormous extent. I am no longer terrified of strangers on the street. It took me a while to figure this out, but I am feeling hopeful, and I cannot remember the last time I felt hopeful. 

I am hopeful that soon, I will be able to smell that wonderful, amazing new baby smell and hold my tiny relative's chubby hands again. I am hopeful that this horrific hurricane we are in will slow down and let us all breathe. I am hopeful, and I am above all grateful to this opportunity that I had. A single day of misery is nothing, nothing compared to Covid.

Although I am not Jewish, it is Passover this weekend, and so it seems entirely appropriate to end this with not the traditional "Next year in Jerusalem" but, "This year in person. This year, in person."

I hope to see you soon.

Friday, March 19, 2021

Review: Neurodiversity, Autism, and Recovery from Sexual Violence: A practical resource for all those working to support victim-survivors

Sonny Hallett
twitter.com/scrappapertiger

Book Cover. Black text at the top reads,  Neurodiversity, Autism & Recovery from Sexual Violence Under is an illustration a seated purple figure holding an armful of pink and purple blossoms. More blossoms surround them on the ground and in the air. smaller black text underneath reads,   by Dr Susy Ridout, Illustrated by Catherine Haywood  Even smaller black text at the bottom reads,"A practical  resource for all those working to support victim-survivors"
[Image: Book Cover. Black text at the top reads,
Neurodiversity, Autism & Recovery from Sexual Violence
Under is an illustration a seated purple figure holding an
armful of pink and purple blossoms. More blossoms
surround them on the ground and in the air.
smaller black text underneath reads, 
 by Dr Susy Ridout, Illustrated by Catherine Haywood 
Even smaller black text at the bottom reads,"
A practical
resource for all those working to support victim-survivors"] 
CN: discussion of sexual violence and abuse

Considering how many autistic people struggle with mental health difficulties related to trauma, there is really very little in the way of resources, let alone good practical guides, for those supporting autistic people dealing with traumatic experiences. What little there is is also so often about us rather than by us, and written from rather clinical and pathologising perspectives. 

Susy Ridout’s book Neurodiversity, Autism, and Recovery from Sexual Violence: A practical resource for all those working to support victim-survivors has therefore been a breath of fresh air to read through—not only because it offers practical and specific guidance on a far too neglected topic, but also because it is a book that truly feels like it comes from the autistic community, centering autistic experiences and needs, and boiling some quite complex ideas down into simple activities and explanations which I feel will make it accessible for a wide range of practitioners and individuals.

Ridout’s book focuses on trauma and recovery from sexual violence (and to a lesser extent relationship-
related trauma), but many of the exercises and ideas in the book could, I think, be equally useful for autistic people dealing with other types of traumatic events and related difficulties. The book is separated into seven sections: Rebuilding your life; Safety; Mental Wellbeing; Physical Wellbeing; Emotions; Friendships, Relationships and Disclosure; and Memory, Concentration and Sensory Experiences. 

While all of the sections are rooted in the context of recovering from sexual violence, and reflect on the additional challenges that might present to an autistic person, most of the chapters also hold a lot of general relevance for supporting autistic people struggling with aspects of their mental health and related day to day living, particularly when there may be traumatic triggers also in the mix. For instance, activities related to rebuilding a routine, body awareness, taking ownership of one’s space, identifying and managing different sensory experiences, etc., all have valuable broader applicability, and could be adapted for different individual’s needs and circumstances.

The topics more specific to recovery from sexual violence also do well to bring in the specific differences and challenges that may apply for autistic victim-survivors. The section on sensory experiences, for example, looks at autistic sensory differences and suggests ways to explore how they might be impacted by trauma. The section on disclosure is excellent, going into some depth on how to support a person to decide whether disclosure might or might not be wanted or necessary, why people might choose not to disclose, clear examples of the of what might need to be considered with disclosure to different categories of people, and an activity to help the individual drill down and gain more clarity and control over what information they might want to give out. 

All of this specificity on organising thoughts, and bringing in the contexts of different types of interpersonal relationships, is an example of Ridout’s great attention to detail in this book, and how it is rooted in the different concerns and uncertainties that are such a familiar part of many autistic people’s experiences.

The only thing that I felt was possibly missing was a little more social context—the confusing nature of social expectations and pressures on autistic people to conform, leading many of us to be uncomfortably uncertain of our boundaries, which no doubt contributes to many of us being hurt and abused by others. I would have also liked a little more on how to clearly define and establish these boundaries for ourselves, and to find ways to recognise when they have been crossed, without self-blame. I think a lot of autistic people (and non-autistic people, to be fair!) can struggle with being sure about our own rights to stating what is and isn’t okay—for example due to being unsure about what is or isn’t ‘normal’ (e.g. “they just wanted a hug, that’s normal” said to someone who doesn’t feel they are allowed to express that not wanting a hug is equally valid and needs to be respected)—and this is something we can often do with more validation and support in exploring. That said, this book does centre the victim-survivor’s autonomy throughout, and in many ways many of the activities around rebuilding one’s life and environment are also in essence about (re)establishing ownership and control of one’s own boundaries and preferences.

The organisations, references and further reading sections of the book show just what an autistic-led and -centred venture this whole project has been. I struggled to find a reference or further reading recommendation that wasn’t by an autistic author, which is just such an unusual and wonderful thing to see, and really highlights the range, quality, and depth of resources and knowledge available from the autistic community. It makes me want to wave this book at non-autistic people working on projects about us and say “if you can’t find enough quality resources by autistic people, you might not be looking hard enough or in the right places!”

The book also introduces and interweaves some really important but potentially complex topics relevant to autistic life experience, including the double empathy problem and theory of monotropism, as well as more generally the context of neurodiversity. However, it does this lightly and practically, making it clear to readers who are supporting autistic people why they need to try to understand and care about these ideas, that in my experience some support workers and other practitioners might otherwise have dismissed as overly academic and not applicable to the day to day of their work.

Overall, the book presents itself as a “toolkit”, which I think is a very apt description, with each section containing a mixture of contextual information, several practical tasks of different types, ‘pull-out’ worksheets at the back, and personal reflections from the author. Ridout’s voice is really present throughout in what feels to me like a really personable way, and gives me a strong sense of the author having tried out each of these activities and ideas, both personally and professionally. Each topic in each section is short and broken up into manageable steps and bullet points, interspersed with Catherine Hayward’s warm and friendly illustrations, making this book feel very easy to pick up and use as a guide, or to dip into for ideas. 

The practical activities range from the more ‘expected’ in this kind of book, of making lists and mind maps, to specific physical activities and how they could be adapted for different needs (and I particularly appreciated the matter-of-course inclusion of planning and sensory environment related issues). There are also quite charming detailed step by step instructions for making objects like cushions, planting herbs, or even making a table. This means that throughout, there is a range of ways for different people to engage with the activities and ideas suggested in this book, depending on their preferences, interests, and abilities.

I think this is a book that institutions, organisations, and practitioners who support autistic people would do well to have to hand—both for its practical guidance and autistic-experience-centred framing, but also I hope that it will encourage readers to also seek out further works and resources that come from the autistic community, by autistic people. I also think that this book could be valuable for autistic people looking for support and ideas for themselves, and I hope that other autistic folks reading it might also feel what I did, in enjoying the feeling of validation and recognition of reading something that feels like it was written for and by people much more like me than is usually the case.

----

Neurodiversity, Autism & Recovery from Sexual Violence: A practical resource for all those working to support victim-survivors by Dr Susy Ridout, Illustrated by Catherine Haywood, is available from Pavilion Publishing (on Twitter at twitter.com/PavPub). The separate sections (more affordable option) are also available as themed booklets directly from the author at www.lulu.com/spotlight/SusyRidout.

Sonny Hallett is an autistic trainer, advocate, and trainee counsellor based in Edinburgh, Scotland. They received a review copy of this book from the publisher.


Friday, March 12, 2021

Towards Autism Acceptance: An Interview With Researcher Desi Jones

Non-autistic people harbor assumptions about autistic people, whether they're aware of them or not. And those biases can get in the way of autistic people being included both socially and professionally. We talked with Desi Jones, a Doctoral Student at the University of Texas at Dallas, whose recent paper Effects of autism acceptance training on explicit and implicit biases toward autism examines how autistic acceptance efforts both succeed and fail in addressing stereotypes about autism, and what this means. We also discussed her work on structural racism in autism research, and how institutions can do better by their autism researchers of color—and why that doesn't merely mean recruiting more POC.

Photo courtesy Desi Jones
[image: Desi Jones, a smiling Black woman
with curly shoulder length purple-tinged hair.]
 
TPGA: Can you tell us about your background, and what drew you to autism research?

Desi Jones: I double majored in Neuroscience and Psychology at Wellesley College, a women’s liberal arts school in Massachusetts. Going into college, I was interested in medicine and wanted to be a neurologist. But when I actually got to college, it was a whole different story. I knew that I was interested in the brain, but I felt deeply unhappy with my courses. We were studying birds and crayfish and chemicals in test tubes, but never studying actual people. All of this research is of course important in its own right, it was just a poor fit for me personally. 

It wasn’t until my junior year of college—I sort of panicked about having no plan in place—I ended up doing two research internships during the same semester. The first was in a developmental psychology lab at MIT, studying how children learn about emotions, whereas the second was at Boston Children’s Hospital working with autistic children. I still don’t know what exactly it was about autism research, maybe it’s because I’m neurodivergent myself, but that second internship resonated with me like nothing else had. 

After graduating, I took a job as a research assistant at UNC-Chapel Hill. My main role was on a collaborative grant about inflexible behaviors in autistic children, but I also did a lot of work on eye tracking studies that looked at differences in social attention for autistic girls and boys. All of this really solidified my interest in working with autistic people, so when I applied to PhD programs, I applied exclusively to labs that did this kind of work. 

TPGA: We appreciate your focusing on autism acceptance training rather than normalization training. What form did your autism acceptance training take? 

Jones: The autism acceptance training video that we used was based on an in-person training session for high school students, which was developed by Dr. Grace Iarocci and her colleagues at Simon Fraser University, in consultation with a group of autistic adults. We modified this training by making it more relevant to an adult audience, but we also wanted to make it more accessible to online audiences, so I changed it from an in-person presentation to a pre-recorded video, and convinced my fiancĂ© to provide narration. The training is about 25 minutes long and it features a lot of short clips from autistic adults, information about autistic strengths and support needs, and recommendations on how to be more accepting and understanding of autistic behaviors. 

TPGA: What you mean by explicit and implicit biases towards autism, and why do they matter?

Jones: When we think of prejudices that people have, these can take two shapes. First, there are the more overt forms, where a person is well aware of their own negative attitudes toward a group. They may openly voice these attitudes, or they may make a conscious effort to conceal them to appear more accepting. These are what we refer to as explicit biases. We studied these biases by asking people what they think of autistic people, such as whether they would want to marry an autistic person, or if they believe that autistic people are able to form friendships. We even showed videos of actual autistic people and asked participants to rate their first impressions of these individuals. 

On the other side of things, we have implicit biases, which are automatic associations that individuals make between a group of people and an attribute. For instance, if you ask a person to imagine an engineer, many people would picture a man, while if you asked them to imagine a nurse, many would picture a woman. These biases are based on stereotypes, not facts—after all, we know that female engineers and male nurses exist! Having an implicit bias doesn’t make you a bad person, and everyone experiences these to some degree. 

One way to study implicit biases is by using a task called an implicit association test (IAT), which measures how strongly people associate a group with positive and negative traits. In our study, we used an IAT to look at how strongly non-autistic people associated autism with negative personal attributes (things like dependency, dangerousness, and social awkwardness), and to see if our training reduced these associations.

Explicit and implicit biases are important in different ways. Explicit biases toward autism can manifest as things like bullying, where others may call autistic people hurtful names or physically harm them because of their differences. Implicit biases are more subtle, but they can impact decisions that people make about autistic people. For example, a police officer who holds an implicit belief that autistic people are dangerous or lack control may be more likely to use excessive force when interacting with an autistic person. 

TPGA: Can you explain how systemic barriers have more impact than autism traits do, when it comes to personal and professional success?

Jones: It isn’t necessarily that systemic barriers have more impact than autistic traits, but more that these systemic factors lead us to interpret autistic traits negatively, and this creates barriers for autistic people. My advisor (Dr. Noah Sasson) has done a lot of research about people’s first impressions of autistic adults, and this work shows that non-autistic people make a lot of negative snap judgements about autistic people. This includes social judgements—non-autistic people report a lower desire to hang out with, or even sit next to, autistic individuals. 

This is what creates barriers to personal and professional success. We have people making assumptions about autistic people based on their traits, then choosing to exclude them. Autistic people face this kind of exclusion across their lives. We see it in professional domains, where they are often paid lower wages and employed at lower rates than people with other disabilities. But we also see it in personal life, where non-autistic people are often reluctant to date or befriend autistic people. 

TPGA: You participated in an Autism in Adulthood roundtable on Structural Racism in Autism Research and Practice, in which you emphasized the need for "cultural sensitivity in researchers and clinicians." Can you elaborate on why this is crucial? 

Jones: I’ve talked a lot about how people’s biases about autism can hurt autistic people, but it’s also true that biases about race and ethnicity can negatively impact autistic people of color. For instance, Black caregivers and Black autistic adults have reported that doctors were initially dismissive of their concerns or made incorrect assumptions about them based on race. This is really harmful to autistic people and can prevent them from getting the care and services that they need. By ensuring that doctors’ treatment plans are not impacted by inaccurate and offensive stereotypes about people of color, we can help to improve access to care for these individuals. 

TPGA: You've also made a call for more racial diversity in autism researchers, which, agreed. Why is this needed, and what steps can the research community take to make this happen?

Jones: When we talk about diversity and inclusion, much of the focus is on recruiting and hiring more people from diverse backgrounds. This is absolutely important, but in my opinion, it is even more important to build systems to support these individuals so that they can continue and thrive in the field. This involves creating spaces where people of color can voice their concerns and experiences without pushback or fear of retaliation. 

Another thing to consider is that people of color often volunteer much of their time to mentor students from similar backgrounds and to educate others about race. Institutions should compensate them fairly for their time, and they should consider all of these outreach efforts when making decisions about tenure. I could say so much more about this, and I have a much longer list of recommendations in the paper itself, but I think that the key takeaway is that the field needs to do a better job of supporting the career development of Black, Latinx, and Indigenous researchers who are already here. 

TPGA: What messages from your work do you most want autism organizations to get behind, and boost?

Jones: I want people to understand the importance of autistic representation. The way that we portray autism, whether it’s through autistic characters in film, how we write about autism, or even the research that we conduct—all of these things impact non-autistic people’s beliefs about autism and the way that they treat actual autistic people. 

When I talk about representation, here is what I mean. We all need to do a better job of involving a range of diverse autistic people—diversity encompassing race and gender identity, as well as other groups that are often erased or excluded, such as older adults, and those who are non-speaking or have intellectual disabilities. These individuals need to be better represented in our outward portrayals of autism, but we also need to do a better job of including them as active contributors within our work, our communities, and our lives as a whole. All of this helps to show that autistic people aren’t a monolith, helping to dispel harmful stereotypes about autism and helping to build more inclusive attitudes toward autistic people. 

Saturday, March 6, 2021

Getting Through The Pandemic With Art-Fueled Joy

Sunday Stillwell

For the past three years, I have worked in a local elementary school as a one-to-one support aide to a handful of K-2 students with various intellectual disabilities, in a self-contained functional academic life-skills (FALS) classroom. My job is to assist the student I am working with in all aspects of their day. I sing songs during circle time, help them learn to request items with their communication devices, teach ABCs and 123s, and during recess I play tag because it made everyone giggle and little bodies have a lot of energy to burn in the last two hours of school. But, hands-down my favorite days are the ones when we draw pictures, sculpt creatures out of clay, or create masterpieces in art class using bits of rolled up tissue paper, glue, and a vivid imagination. My favorite days.

Then, in March 2020, COVID-19 hit, and those in positions like mine weren’t sure where we fit in the “virtual learning classroom.”  I, for one, didn’t work at all for the rest of that school year.  I missed seeing my little friends every day. I missed drawing pictures with them, and making them giggle by pretending to be a T-Rex loose on the playground. 

I filled my newly free days by spending time with my own kids who were now back home, full time. We went on a lot of very long walks, drew on the sidewalks with chalk, watched videos on how to fold origami, and put together inexpensive foam critters I ordered from the local craft shop. Art and nature became a solace for my younger son and me, while technology and YouTube sustained my older son. We settled into a new normal, and it reminded me a lot of when my boys were both very young and I was a stay-at-home mom trying to balance it all.

Image: Caucasian teen boy drawing with chalk on blacktop pavement in a rainbow of colors.
[Image: Caucasian teen boy drawing with chalk on blacktop pavement in a rainbow of colors.]

Caucasian teen boy holding a long branch he has colored with chalk in a rainbow pattern.
[Image: Caucasian teen boy holding a long branch
he has colored with chalk in a rainbow pattern.]

We made it through the rest of the spring and summer following the same daily routine of walking, watching movies, and doing art projects. I found solace in coloring books centered around nature and flowers. Sam drew ABC pictures and cut them out individually to “swizzle” (his word for flashing items quickly in front of his eyes), and at the end of the summer I found we had gone through an obscene amount of paper, colored pencils and other supplies. It was entirely worth it.

ABCs individually cut out and drawn by my 18 year old son to “swizzle.”
[Image: ABCs individually cut out and drawn by my 18 year old son to “swizzle.”] 

Thankfully, at the beginning of the 2020-21 school year I was asked to return as a one-to-one support aide working with a second grader I had previously taught in another program, two years earlier.  This was my first time experiencing both a neurotypical classroom as well as a virtual learning environment, and I was pleasantly surprised to find I really enjoy it. It helps immensely to work with teachers who flourish not just in the classroom but behind a computer screen as well. The teacher I work each day is sassy and fun but also firm. She introduced the class to a super-fun and YouTube channel, Art For Kids Hub, that teaches step-by-step drawing. Since the start of the year, we’ve done dozens of drawings. Everything from koalas to valentine dinosaurs.

Image: Caucasion woman’s hand holding a white sheet of paper with a black and white drawing of a dinosaur holding a heart with a bite taken out of it.
[Image: Caucasion woman’s hand holding a white sheet of paper with a
black and white drawing of a dinosaur holding a heart with a bite taken out of it.]

Meanwhile in art class each week the kids and I tune in and answer a silly icebreaker question such as, “On a scale of cat how are you feeling today?”

Image: 9 various cats making silly, scared, happy, or sleepy faces

[Image: 9 various cats making silly, scared, happy, or sleepy faces.]

We then transition into this week’s project which have run the gamut from making a clay pinch pot, to designing our own USPS stamp, and my personal favorite: a silly sandwich with a piece of bread drawn on the top and bottom of the page and filled inside with strange objects depending on our likes or dislikes. I asked my second graders for suggestions for my sandwich, which is how I ended up with a truck, snake, banana, sushi, and rainbow-cloud sandwich with a large gap just waiting for the final addition. 

Image Left: A silly sandwich designed by the author.  Image Right: A hand-drawn virtual class with the teacher and students in their own squares.
[Image Left: A silly sandwich designed by the author. 
Image Right: A hand-drawn virtual class with the teacher and students in their own squares.]

If I have learned anything during this pandemic it is to be flexible, and lean into the activities that bring you comfort. Depending on the season, or how you slept the night before, your comfort may look different from those around you. I find solace in taking a long walk every day. Being in nature soothes my soul and centers me. I also keep several art materials on hand to cycle through when inspiration washes over me. I have found that the popular store Five Below has excellent spiral-bound drawing notebooks, coloring books, markers, crayons, modeling clays, and other materials that would cost much more if purchased at an actual craft or art store.

The most important thing right now is to be kind to yourself. Art and expressing oneself through creativity can be an excellent tool to soothe anxiety, and don't underestimate the satisfaction of sculpting a city with clay and inviting your kids to pretend they’re Godzilla and smash the crap out of it.  Sometimes kindness looks a lot like rainbow-colored destruction and that’s A-Ok with me.

Thursday, March 4, 2021

Challenging Kickstarter’s Support of a “Torture Device”: Interview With Advocate Rory McCarthy

Anne Borden King
twitter.com/AgainstCures

Screen capture from a video, showing the back of a person's neck  with a small buzzing device attached with a gel pack
The NOIT device in use
[image: Screen capture from a video, showing the back of a person's neck 
with a small buzzing device attached with a gel pack or some such.]






The NOIT product was first flagged Rory McCarthy, an advocate in the ADHD and autistic communities. The device is attached to the base of a child’s neck with glue. It stays attached to the child throughout the day, emitting loud beeps every eight seconds. Its marketers claim that this “Natural Orientation Inducing Tool (NOIT)” is a “tool to create and maintain focused attention.” There is no research or evidence to support this claim. 

Despite this, NOIT marketers earned nearly $150,000 promoting the product on Kickstarter, even as members of the ADHD and autistic community reached out to Kickstarter, asking it to remove the product from its platform and calling it a torture device. A petition asking Kickstarter to take down the campaign gained more than 12,000 signatures in five days.

McCarthy researched the device and its claims, finding that NOIT’s makers recommended the product be used on non-speaking autistic children as part of what Rory identified as “a completely unscientific approach for treating autism.” Not only was there no peer-reviewed research on the NOIT, but it breached three rules of Kickstarter’s Prohibited Items Policy, including: “any item claiming to diagnose, cure, treat, or prevent an illness or condition (whether via a device, app, book, nutritional supplement, or other means).”

Rory originated the petition entitled “Stop Kickstarter from allowing child abuse of neurodivergent children.” They also wrote about the NOIT campaign in The Spinoff, concluding “We need people to accept and try and understand us, not to cure us.”

I recently spoke to Rory about the NOIT, Kickstarter, consent and human rights.

Photo of Rory McCarthy, a person with light skin, glasses, short dark hair,  and a trimmed beard and mustache. A chocolate point Siamese cat is on their shoulder.
[image: Photo of Rory McCarthy, a person with light skin, glasses, short dark hair,
and a trimmed beard and mustache. A chocolate point Siamese cat is on their shoulder.


Anne: How did you find out about the NOIT?

Rory: I am in a number of support groups on Facebook for Autism and ADHD. The device was linked in a parental support group where people were saying things like “I need to use this for my child,” “this seems great,” and similar. It was then also posted onto the main adult support group.

Anne: What was your reaction when you read about it?

Rory: I had several reactions. At first I was intrigued and skeptical—maybe this could be an alternative for helping people concentrate. Then I started looking deeper into the device. I watched the promotional videos, and none of them showed them initially putting the device on the child—this set off a lot of red flags for me. 

The position where the device is attached to the child makes it very inaccessible for the children to reach. It's also attached with adhesive. This would be awful from a sensory perspective; just thinking about it makes me uncomfortable. The creator of the Kickstarter campaign turns it off during the video as it's a “little distracting”…which for a device that's supposed to be about focusing attention seems quite concerning. 

Anne: You tweeted about the NOIT. What was the community response to those tweets?

Rory: The first tweet I made was just pure dismay. I tweeted, “How to traumatize yourself or child with ADHD.” I am fairly recent to the advocate community (especially for autism, having only been diagnosed this year but have been active advocating for ADHD since mid-2019). The response was near uniform: Everyone was shocked at the idea that this device would be used on children, and that no evidence appeared to exist besides some testimonies. A very small number of adults—two out of several hundred responses—said they might be willing to try it, but could also see the issues with consent.

Anne: What more have you learned about the NOIT since then? What does the company claim it can do?

Rory: I think the most shocking discovery was that this is already used to treat non-speaking children with autism as part of an approach known as the Davis Method. More shocking was the discovery that this method is practised in my home country—Aotearoa New Zealand. 

The campaigner claimed that it was only put on willing participants, but [ascertaining that] is difficult, especially at a young age. 

The NOIT research website looks like something out of a cult (complete with pyramid iconography) and the “independent research” that they claimed to have was in progress since 2016. There's no peer-reviewed science. It was all witness testimony, and a few anonymous adult testimonials. They claim that the product helps bring attention in line, but as someone with hyperacusis*, this would probably cause me to melt down fast. It would cause significant mental distress. 

Anne: Beth Shier, who ran the Kickstarter campaign, claims that it is “easy to remove”. Can you respond to that claim?

Rory: It uses adhesive to attach the device, from what I can see in the video. The idea that it's easy to remove might be true of having someone else to remove it from you, but you can run a pretty easy self-experiment here and try and reach the part of your neck between the shoulder blades. It's not easily accessible. Depending on the strength of the adhesive also, it could actually cause some pretty bad tissue damage when removing it, especially if done in haste.

Anne: What do you think is the ultimate goal of using devices like this on children? 

Rory: I actually don't need to guess the ultimate goal because it's explicitly stated on their website: “Families of children who have used the NOIT unit have reported the following changes: less repetitive or ritualistic behaviors, less self-injury, improved focus and attention, improved social interaction, and improved language skills.”

What disturbs me greatly here is that they appear to be trying to make children with autism conform to more neurotypical standards. Stimming behaviour actually relieves anxiety for people with autism. It's a coping mechanism that helps to reduce meltdowns and shutdowns. The effects of masking this behavior long term is actually significantly detrimental to people with autism. 

I am living proof unfortunately of the harm of long-term masking. I went through autistic burnout as my autistic behaviour had been masked for so long [that] I didn't even realize I was masking all the time and had been doing so for most of my life. I didn't know what was happening to me last year when going through a “mental health crisis” as I was not diagnosed, my behaviour had no easy explanation and I actually thought I was losing my mind. It's not an experience anyone should have. Then I started to actually realize how significantly terrible conforming can be for neurodivergent people.  

Anne: You started a petition to get NOIT taken off of Kickstarter. It received 12,531 signatures in 5 days. How has Kickstarter responded?

Rory: Their response has been quite awful. At first when we reported it after my first tweet, they denied there was any problem with the Kickstarter campaign, even though it appeared to be a clear violation of three rules. Under their prohibited items policy they say that "Any item claiming to diagnose, cure, treat, or prevent an illness or condition (whether via a device, app, book, nutritional supplement, or other means)" is not allowed. We were outright rejected on this—Kickstarter saying it didn't violate policy. 

Next, some people started to receive emails saying that Kickstarter had taken action, but it might not be visible to the Kickstarter community—however the campaign was still running and accepting donations. The Kickstarter [campaign] then concluded at the agreed date without any obvious action being taken.

I wanted to pursue legal action against them and had been offered assistance from lawyers, but after a media article came out—lawyers said it would be incredibly difficult to prosecute Kickstarter, as there is a lot of ambiguity in the application of law in this area.

Anne: Our community responded strongly and quickly to this product, after your tweets. My hope is that platforms like Kickstarter are beginning to realize they have to come to terms with their own biases…or at least see how condoning this kind of product is bad for their image. 

Do you think a time will come when Kickstarter and other platforms will pre-emptively ban this type of content, because they know the community is watching and will call them out?

Rory: I wish this was the case. Unfortunately, the lived experience of adults with ADHD and autism is still largely discounted. Due to the fact that neurotypical society sees us as deficient or defective, along with widespread misconceptions about how autism presents, we cannot be allowed to form our own opinions. 

Even though we actually know more about ourselves than science has tried to extrapolate, unlearning the things people say about me that don't align with who I know I am has been one of the greatest challenges. I've discovered more about myself through self-advocacy of people with autism than the scientific field has ever correctly hypothesized, and knowing the mechanisms means that I can effectively develop strategies to deal with common negative symptoms that cause us challenges.

Anne: There’s an entire, multi-billion dollar market around autism & ADHD, with “miracle” treatment scams being marketed to parents through many channels, including Kickstarter, GoFundMe, Facebook and other social media. What’s your advice to parents when they come across an ad or promotion for a product like this?

Rory: I think a pretty good starting point should be “What would I think if this was done to me as a child?” If you wouldn't want it for yourself, you shouldn't want it for your more vulnerable child. If a treatment is trying to reduce stimming behaviour, or to make your child more conforming to the current society we have, or framing autism as only a burden and that treatment or “curing” autism is the right approach, you should discount it in all cases. 

Please, think of your children, think of how traumatic certain things must be with sensory sensitivities, with amplified hearing. We need you to accept us, empathize, and try to understand our perspective. 

Change will not happen consensually with forced application—and the long term effects of these approaches have been shown to cause significant trauma or long term psychological issues. Intensive programs are equivalent to conversion therapy. They are not ethical or helpful.

____

*Hyperacusis: Sensitivity to certain frequencies and volume ranges of sound, or a lower than average tolerance for environmental noise. Hyperacusis is common in autistic and other neurodivergent people.

Tuesday, March 2, 2021

Getting the COVID-19 Vaccine While Autistic

vaccine
Photo © VCUCNS | Flickr / Creative Commons
[image: A person wearing a black tank top getting a vaccine injection in their shoulder.]

by Kate

On Monday, February 15, I was lucky enough to get my first dose of the new Moderna vaccine for the COVID-19 virus.

I say lucky, but in reality, it was a matter of various privileges, such as race, class, and education, all combined with the fact that I moved into a certain type of housing last summer. I had been communicating with a staff member for my local health department about something else related to the pandemic, and when the subject of vaccines came up, this person told me that I qualified and I should make an appointment right then. So I did: CVS, a local pharmacy chain, had just been allocated a large number of vaccines, so it was fairly easy for me at that moment to get an appointment.

Of course, my experience was an anomaly. The fact is is that the vaccine roll out in the United States has been an utter disaster. It seemed to start off strong, with emergency room doctors and other healthcare professionals proudly rolling up their arms for the shot, but since then, there has been almost nothing fair, equitable, or understandable about it. Right now, if you happen to qualify in your state, it is a matter of various privileges, hard work on a computer, a lot of luck and very likely, knowing the right people who give you the right tips, like I did. 

This article will not tell you how to get an appointment for a vaccine, because it seems that every state and every county in the US is doing it very differently. The CDC (Center for Disease Control) guidelines that were issued for the distribution of the vaccines seem to leave an awful lot of things open to interpretation, and no two institutions or governmental entities are interpreting the guidelines the same way. Other countries seem to be doing it just as badly, even Canada, which like many Americans I view as a sort of socialist utopia, full of maple syrup, friendly people, and universal healthcare.

It is the opinion of this author, and many, many other people, including scientists from around the world that if you are able to get a vaccine, and if your doctor thinks that it is safe for you, then it is simply common sense to get one. We need to get as many vaccines into as many bodies as possible in order to stop this pandemic. We need to stop this pandemic so that we can reopen society and schools, and see our friends and family, but most importantly, we need to stop this pandemic so that people stop dying of COVID-19.

I flunked out of chemistry in 11th grade, and I do not even pretend to understand the majority of scientific things, but I do understand that the Covid 19 vaccine works. How it works, that I do not understand. I don’t know the difference between DNA and RNA and MRNA, but honestly? I… don’t need to. Instead of trusting my own, precarious scientific understanding, I have made the choice to trust the people I know—and know of—to understand the science behind the vaccines

I trust my personal healthcare team, I trust my family members and friends who understand vaccines, I trust people on the national and international level, like Dr. Anthony Fauci, when they say that the vaccines are safe and that they work the way they are supposed to. Again, my privilege shows, because as a white person I do not have the generational trauma that leads many people of color to rightfully distrust the medical establishment. I know that, while for me it was an easy choice, it may not be an easy choice for other people. But there is been absolutely nothing in this pandemic that has been easy. We all just need to keep on keeping on as best we can, and for me, that means getting vaccinated.

I was extremely excited to get the vaccine, because like everyone else, my world has changed dramatically since last March—and frankly, I detest it. I detest wearing masks, I hate online church, and I miss seeing friends and family in person so much that it feels like spikes are being pounded into my chest. In just the past two months, I have made the very difficult decision to stop seeing my mother in person for reasons of safety, and (totally unrelated) I also have also dealt with bedbugs in my apartment. (Bedbugs + OCD + a pandemic which means you can’t get help from people to bag and disinfect stuff = total hell.) When I found out that I could get the vaccine, it felt like a weight had been lifted. I felt like I could actually breathe.

And so, on that Monday morning, I got dressed up—because I have not had a reason to get dressed up in nearly a year, and I figured that this was a momentous occasion if there ever was one—and drove to the CVS where I was scheduled to get my shot. I brought: my phone, a book to read in case I had to wait, water, hand sanitizer, masks (of course) and a doctor’s letter specifying that if at all possible, I should receive the vaccine in an area other than my arm. This is because I have fibromyalgia which is centered on my arms, and experience with other shots has shown me that it will be triggered by a shot there.

When I got to the CVS, I attempted to check in online, only to be told that it was too early, and I had to wait until 15 minutes before my appointment. Finally the clock turned to 11:30 and I was able to check in. I then went into the store and checked in two more times at two different places. When I had registered online, I had had to upload copies of my insurance and my license, but since I use CVS for all of my medications, I had no worries about giving them this information. They already know basically everything about me, anyway.

I was surprised that I had to wait in a line to get the shot when I had a specific time slot, but apparently the computer was having problems. CVS was only four days into distributing the vaccines, so I wasn’t complaining. The line looked very long, but this was because people were spread out, 6 feet apart. I had to wait about 15 or 20 minutes. Then I got to the front of the line and confirmed my name and basic information, and gave the technician my doctor's letter.

This is where my experience differs from other people's, because the technician spent a good 10 to 15 minutes looking things up, to confirm that it was okay to do what my doctor had said to do in his letter. Finally she determined that an injection site other than my arm was fine. I went in to a room that had two stations for people to get shots at, each separated by Plexiglas. There were two technicians, who took your temperature and your oxygen level, and confirmed that you had not had symptoms of COVID recently. They then swabbed the shot area with an alcohol wipe, loaded the needle, and quickly injected me. I did not feel the needle going in, because it was very fine and only an inch long. The put a Band-over the injection site, and then I followed floor arrows to a waiting area.

Like many other vaccines, you have to wait onsite for 15 minutes after you get the shot, in case you have an allergic reaction. (I used this time to update Facebook about getting the vaccine.) The people around me were all much older than me. They reminded me of the fact that I was getting the vaccine ahead of almost everybody I knew, and I felt bad, because I wished that everyone could get the vaccine right away so that they could feel safer, too.

A pharmacy employee was monitoring the waiting area, and she made small talk, asking people why they were getting the vaccine. To me this was a stupid question, because in my mind there is only one reason to get the vaccine: to save lives. I was very surprised when one elderly man explained that COVID was no big deal, that he had had it with no symptoms in the spring, the government overhyped it, that if it was his time to go he would just die,  and he was only getting the vaccine so that he could travel safely. Although I have encountered these thoughts online and in the news media, I have never actually met someone with these views and was utterly astonished, and exclaimed loudly, “I got it so that I don’t DIE and so that others don’t DIE!” 

The waiting area, perhaps unsurprisingly, got very quiet after that. People do not like to think about the fact that COVID and death are so tightly wound together. Many non-autistic people will put COVID out of their minds and not think about it. I think about COVID constantly, just as I constantly think about those who have suffered and died from it.

I think that the autistic experience of the COVID pandemic is very different from that of other Americans, because many of us feel emotions so deeply, and we tend to think about the details of things a lot. To me, it is easy to imagine that specific mother, father, cousin, or friend who died, and to empathize so much with strangers' losses that it is physically painful. I can’t say that I’ve ever felt anything when I hear about the Dow going up or down, but I have bent over in pain when a friend is very ill, and I have wept in sympathy for the permanent physical damage that COVID does to people’s bodies.

My fifteen minutes soon went by, and I could leave. I went to the Trader Joe’s next door and I bought myself a cake to celebrate. I immediately noticed that it was a little hard to walk, because I felt like I had been punched repeatedly in my thigh, right where the shot went in. That area looked a little bruised and red, and over a week later it is still hard and reddish, and if I think about it, yes, it hurts. I was also more tired that week, not just regular tired but sleepy in the middle of the day, which was weird. 

From my online research and talking to other people, these reactions are a little bit bigger than most people’s reactions, but like most autistic people’s bodies, mine is weird, so it makes sense that my reactions are weird. I am not really looking forward to the side effects from the next dose, which I will receive on March 15, because everyone says that that one is much worse. I plan to communicate with my doctors ahead of time and to put in place a good support system for that week. Luckily, like most people, my schedule is very empty these days so I will not be missing anything.

I am very glad that I was able to get the vaccine. For months I have honestly felt a bit like a murderer whenever I leave the house, because I know that the virus can potentially go through my mask and infect others without my having any symptoms. As someone who tries to be as moral as possible in all areas of my life, invasive thoughts like this one are truly distressing. I will continue to follow all of the CDC and local guidelines. I am not going to any parties, I will not eat out in restaurants, or do truly unnecessary things, but getting a hug from my mom will be a million times better than anything any psychiatrist could ever offer. Traveling is fun, parties are enjoyable, fairs and festivals and parades are also missed. But it is the little things, like hugs, that this pandemic has taken away from me—it is the little things that hurt the most, and it is the little things that I hope to get back as a result of getting that little shot.

Notes

In the week and a half since I got my first shot, a number of my friends have also gotten theirs. My parents also have their appointments scheduled for March. I will update TPGA on the experience of getting my second shot. 

Herd immunity is a term that you may see used when talking about COVID-19. Please be aware that it has absolutely nothing to do with cows. (Cows are, however, amazing, pleasant creatures. I met a miniature cow once, and it was actually surprisingly big.)

Many articles talk about if you ‘choose’ to get the vaccine. I acknowledge that for many people, it may not be their choice. If you have a guardianship or conservatorship in place, or if you live in a residential setting such as a group home, you may not be given a choice about whether to receive the vaccine. If this is the case for you, I am so very sorry that you lack this basic right. Please know that there are other autistic self advocates out there who are willing to talk to you about this and about how difficult it may be to not have a choice when it comes to your own body, and to help you find ways to get more autonomy in the future.

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