Saturday, July 14, 2018

Book Review: The State of Grace, by Rachael Lucas

Elizabeth Bartmess
elizabethbartmess.com

Book Cover via GoodReads.com
[image: Cover of the book The State of Grace:
A medium-green background covered with rows
of lighter green happy face emojis tilted sideways,
except one pink sad face emoji on the lower right.
Large white text in an all-caps informal font reads:
"The State of Grace"
Smaller text in white script reads, "Rachael Lucas"
Smaller white all-caps informal text in the upper right
reads, "Sometimes fitting in means standing out."]
The State of Grace is a young adult novel narrated by Grace, a fifteen-year-old high school student who deals with common teenage issues like dating, friendships, family conflict, and birthday parties, while also being autistic in a world not designed for autistic people.

Grace is a well-rounded and sympathetic character. She has various interests (horses, wildlife, Doctor Who, My Little Ponies), rides and cares for a horse, has friendships and complex relationships with her family members, and has a good—and sometimes entertainingly snarky—sense of humor. She's introspective and insightful about how being autistic affects her needs, such as extra recovery time after social interaction and the ability to leave stressful situations. She also has a good sense of how others' willingness (or refusal) to accommodate those needs affects her ability to deal with everyday life. She also has other issues common to autistic people, including sensory overwhelm, sleep schedule dysregulation, difficulty interpreting others' imprecise or implicit communication, and difficulty providing other people with the responses and body language they expect.

The book shows clearly how even though Grace is often able to pass as neurotypical, it takes extensive effort:
"[m]y head is full of all the things I have to remember when I'm being a person every day: don't be rude, don't stare, don't look blankly into space when you're not thinking anything, shut down the noises of everything talking, concentrate, hold it together, don't have a meltdown…" (101-102)
Grace's descriptions are given in ways that autistic readers will connect with, and with enough detail (as far as I can tell) for neurotypical readers to understand what it can be like to be autistic while having to deal with the demands of ordinary life—a careful and impressive balance.

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Throughout, the focus is kept on Grace's experience of the world, rather than others' experience of Grace—as it should be. This is particularly evident in her commentary on how other people treat her, which includes her frustration with not being consulted on important decisions, and not being believed or asked about her experiences:
"My parents seem to think life will be easier if my autism is on a need-to-know basis. I'm not sure it works, but nobody bothered to ask me." (32) 
"[T]he Quiet Room is a) next to the canteen so it smells of hot metal and thin, pointy headaches and b) is opposite the Gym Hall so the thud thud thud of basketballs makes me want to scream. But I suppose they tried. It's a shame they didn't actually consult anyone who'd want to use it, and that's why it ends up being a glorified store cupboard with a wall stacked with props from the end of-term performance and a stack of leftover copies of Of Mice and Men beside the ergonomic beanbag (hissing noise, weird smell) and a token lava lamp and some inspirational posters. And a dying plant." (5) 
"[People] tell me what they think I feel because they've read it in books, or they say incredible things like 'autistic people have no sense or humor or imagination or empathy' when I'm standing right there beside them (and one day I'm going to point out that that is more than a little bit rude, not to mention Not Even True) or they—even worse—talk to me like I'm about five, and can't understand." (134-135)
The focus on Grace’s experience also carries through in what’s made obvious to the reader and what isn’t. For example, there's something going on with the mother's new friend being a bad influence, and it wasn't clear what was going on until Grace learned more later. This is a refreshing change from portrayals where an autistic character's social difficulties are shown by their failing to understand something made so clear to the reader that the character seems to be ignoring obvious truths.

Instead, The State of Grace shows something more accurate: Grace has difficulty detecting and processing cues relevant to accurately understanding (some) social situations. Because the novel stays in her experience, the reader isn’t being provided with the neatly prepackaged information that a neurotypical person might perceive; they’re seeing the same genuinely ambiguous information that Grace is. That means Grace comes across as someone who’s doing her best despite not having all the information she needs, instead of being portrayed as having all the information she needs but inexplicably failing to draw the obvious conclusions. This will ring true for many autistic people, and give many non-autistic people an accurate window into a common (and frustrating) autistic experience.

This is a very effective window on a particular aspect of autistic experience.

Another realistic ongoing theme is Grace's difficulty negotiating for what she needs:
"I need to be quiet, somewhere, and just let myself settle, like a snow globe. But it's hard to make people understand that." (76) 
"Sometimes I end up staying places for hours longer than I want to because I don't know how to make my excuses and leave." (167)
Grace thinks of herself judgmentally sometimes, for example criticizing her tendency to monologue about special interests: "…even I can tell when I'm doing the fascinating facts by Grace thing sometimes" (116). She also references enacting neurotypical-defined rules as "being a person" (14) and says she "speak[s] human as a second language" (8). Although I would not want readers to walk away from the book equating being autistic with not being fully a person or human, this mirrors ways I've thought about my own experiences, and seeing it on the page made me feel connected with the character. (Other people's mileage may vary.)

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In some areas the book edges into a "burden" trope, particularly with respect to Grace’s thirteen-year-old sister Leah. Both Grace's grandmother and Grace think her mother has overburdened Leah, because Leah is "sensible" (147); Grace's mother justifies this by saying Leah is "the capable one" (149) compared to Grace. Her mother has made Leah responsible for looking after Grace at times in the past. Grace's mother is also shown as having to choose between getting a job (which she wants to do) and staying at home to take care of children, although it's not clear that she actually needs to. It's also stated that "the voluntary stuff she does with the local autism support group takes over her entire life" (23).

These read to me as suboptimal parenting decisions by Grace’s mother, rather than something inherent to Grace being autistic, but someone who came to the book exposed to the stereotype of autistic people as burdens might interpret it as consistent with the stereotype. It helps that Grace's narrative make it clear that being autistic affects her far more than it affects others. This reflects autistic people’s real-life experiences: it is harder to be us than to be our family members.

There are also several incidents where Grace creates or contributes to situations where others are harmed, or narrowly escape harm. In one case, she shoves her sister into a wall after an unrelated argument with other people, because her sister’s "in the way and she's always so perfect and I hate myself" (97). In another, she makes an unwise decision while trying to impress a friend group, and isn't able to stop herself in midstream despite knowing it’s a bad idea (a type of executive-function failure that I can relate to). The third incident seemed like a bad decision that a non-autistic teenager could have easily made, and unrelated to her being autistic.

Her sister, mother, and friends readily forgive her, and no one talks with her about what she could do differently to prevent the same things from happening again. She feels terrible about each incident, but it felt like she was being let off unusually easily, or that they didn't think she’d be able to do better, and I wished they’d been portrayed as having more respect for her ability to change.

In real life, autistic people sometimes need more tolerance for mistakes because we have difficulty regulating our behavior in certain situations, or because we don’t always read situations well. And there are things it isn’t realistic to expect us to do—for example, we can’t stop a meltdown in midstream. It’s important to not try to make us change things about ourselves we can’t change, and it’s also important to recognize that we can (and should, and generally want to) figure out why we made avoidable mistakes, so we can avoid making them again.

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Apart from the above issues, Grace's relationships with others were portrayed well. Her mother felt like a realistic mixed character, someone who messes up but also works to do better. She doesn't always understand Grace's perspective, but plays a supportive role; Grace says her mother "might make me want to scream sometimes, but she is good at recognizing when I've hit the wall and keeping me from losing it" (37).

Her relationship with her best friend also felt realistic. The friend, Anna, is described as the kind of person who is friends with everyone. She also helps Grace with some social stuff, e.g., interpreting ambiguous text messages. Although not universal, this is a common real-life friendship pattern I've seen described in non-fiction. Grace also mentions some reasons why Anna is friends with her: she makes Anna laugh and they have shared interests in fandom. This lets us see their friendship is not one-sided.

Grace connects with her love interest, Gabe, partly through shared fandom. Since shared interests are a common way for autistic people to develop meaningful relationships in real life, I appreciated it being portrayed here. Similarly, it’s common for us to become friends with other neurodivergent people, and Gabe has ADHD. There’s a charming scene where Gabe shares some of his ADHD-related experiences with Grace, and Grace tells him she’s autistic; he then asks her what it’s like, and listens when she tells him.

One thing that stood out to me was Grace’s lack of connection with other autistic people, especially since her mother volunteers with an autism support group. She also doesn't seem to access any online resources or read any materials by or for autistic people. Although the book's time period isn't given, because it doesn't reference social media and Grace and her friends only use their phones for talking and texting, it comes across as set before the proliferation of communities and materials by and for autistic people in the last 5-10 years. This isn’t a problem with the book per se—but I wouldn’t want anyone new to reading about autism to walk away from the book thinking that Grace’s relative isolation from other autistic people is a reasonable default state.

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Overall, though I had some concerns, they were outweighed by the realistic, sympathetic, detailed portrayal of Grace's experiences; the book clearly shows how and why our experiences can differ from neurotypical people even when we’re ostensibly in the same situations. Speaking personally, I felt the book offered a glimpse into what my life could have been like if I'd been diagnosed when younger (but not subjected to ABA, or at least pulled out of it quickly) and had a supportive neurotypical friend. Grace's awareness of herself as autistic helps her calibrate her understanding of her own needs realistically, and understand why the world is particularly difficult for her—something that would have been incredibly helpful to me at the same age.

Autistic people vary a great deal, and we'll vary in how much overlap we have with Grace. That said, I would recommend this book both for autistic people looking for something to connect with, and for non-autistic people looking to understand autistic experiences better, with a caveat: Point them toward additional resources by autistic people. Learning from and connecting with autistic people is important and very helpful for other autistic people, as well as for their family members, whether autistic or neurotypical themselves. I would recommend Kit Mead's list of autism resources as a good starting point.

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Two content notes for the book: some alcohol abuse by family members; two brief references to past ABA-like therapy; potential harm to an animal.

Thursday, July 5, 2018

An (Autistic) Review of Vibes Hi-Fi Earplugs

Vibes Hi-Fi Earplugs. Photo from www.discovervibes.com
[image: White earplugs resting in a black box with red sides.]
Jeff at Spectrum Disordered
www.facebook.com/asdisordered

First off, I am quite sensory sensitive/defensive to noise. “Bad” sounds shut me down and hurt, even at low volumes, if it is the wrong type of noise.

My existing coping mechanisms have been playing music through in-ear headphones, and foam earplugs. I haven’t tried many stand-alone active noise-canceling products, save for a few hi-fi music headphones with noise cancelling features.

In reviewing the Vibes earplugs, I am primarily contrasting them with foam earplugs.

Unboxing


The Vibes come in an attractive small package, containing items similar to what you would expect from music earbuds: the earplugs themselves, additional small and large fit rubber earbud inserts, and matchbook-sized carrying case. For anyone who has carried foam earbuds in a pocket, the carrying case is a bonus. Though the case is fairly low-grade plastic, but the earplugs themselves feel well made and sturdy.

Comfort, Fit, Appearance


These areas are where the Vibes shined for me. The large size was the best fit for my ears, and I found them by far to be the most comfortable earplug (or music earbud) I have ever worn. This is high praise. They are very light, and unlike foam earplugs, they do not apply pressure to your ear canal when sealed.

In one case, I spent about a minute searching around my desk for one of the earplugs. I found that I still had it in my ear. I never “forget” I have stuck something in my ear. Ever.

The ear plugs are almost invisible when in. My wife, knowing I was wearing them, could not see them in my ears from five feet away. This makes them far less visible than neon foam earplugs, and over the ear devices. However, this also means people will not recognize you are wearing earplugs and increase their conversational volume to accommodate you.

Performance and Sound Quality


This is where the Vibes turn into a bit of a mixed bag.

Pros: They work about as well as foam earplugs in reducing volume. They transmit a better frequency range of sound than foam earplugs. However, take manufacturer claims of sound quality with a big grain of salt.

The Vibes website,  www.discovervibes.com/our-products, states these earplugs “lower decibel of your environment without sacrificing sound clarity.” Erm. They do much better than foam earplugs in transmitting a broader frequency range with less “muddying,” but they still take away quite a lot of higher frequencies.

I tested the sound quality by inserting the Vibes and then putting on a good pair of over the ear headphones. I chose Metallica’s Black Album to test the sound quality, as the Black Album “sound” is characterized by a heavy bass guitar line on the low end, vocals in the middle frequency, and wailing guitars and cymbal crashes on the high end. Famously, the drum mix favored the high end without booming bass drum sounds, so the result is little overlap on the soundstage.

I listened without the Vibes, then inserted the Vibes and increased the volume back to the same listening level. I found the cymbal crashes almost disappeared from the sound stage, so clearly the Vibes are filtering out more high-end frequencies than low end. “Hi Fi” is a serious stretch here, you are losing a lot of sound frequency.

Cons: For me, an immediate, visceral, “bad sound” con was the sounds that these earplugs make rubbing against my ear canal. The closest I can explain is that the sound was like that of a dry Q-tip in one’s ear: plastic-y “rubbing” noises that occurred whenever I moved my head, every step I took, every time something made my ears move. Not good. For the several hours that I tried the earplugs, this sound was present. However, the noise attenuated over time—I believe in part because of the earplug break-in process, in part because earwax “greased” the rubber of the earplugs. At first it was very unpleasant, but over time, it got to where I didn’t personally feel it was a deal breaker. However, it never went away and I doubt it will.

Effectiveness As Adaptive Tech for Autistics


It is hard to quantify this factor, as everyone has their own personal diet of good and bad sounds. While wearing Vibes in an office setting, I found that they reduced (but did not eliminate) the air conditioning droning. In a street setting, traffic noise and rustling of leaves in the breeze was very attenuated, and it was in this setting where it felt the noise reduction was most effective in filtering unwanted extraneous noise. In a vehicle, again it felt effective at lowering the extraneous engine and climate control noise.

I found it hard to carry on a conversation while wearing the earplugs. At a conversational volume I found myself pulling the plugs out to hear. Obviously that means they are effective at lowering the sound volume, but I suspect most autistics would prefer a solution that allowed them to have conversations without removing the device.

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Disclosure: A Vibes rep provided earplugs for the author to use in his review.

Tuesday, July 3, 2018

Autism and Addiction: A Problem with Deep Roots

Take the red pill
Photo © Taston | Flickr / Creative Commons
[image: A white person's hand reaching for a blister pack of red & blue pills]

Maxfield Sparrow
unstrangemind.com

Autistic people stereotypically don’t drink alcohol, or take drugs. We love clear boundaries and rules, so we don’t do anything illegal. We’re generally less susceptible to peer pressure. And everyone knows drinking is a social activity, so obviously autistic people wouldn’t even drink, let alone become alcoholics. Right?

Wrong.

Not only do some autistics drink and/or use drugs, but we risk addiction as well. The roots of autistic people's addiction can go all the way back to childhood, so it’s very important to think about how we are raising autistic children today—if we want to help them avoid the pitfalls of addiction in the future.

Why Do Autistics Drink and/or Use Drugs?


This question is easy to answer. Ask any autistic person—even those who don’t drink alcohol or use drugs—and they will probably answer off the top of their head: Mind-altering substances lower inhibitions, helping people get past shyness or anxiety. It’s a form of self-medication. Alcohol and some kinds of drugs can also numb senses, which some autistics with painful sensory issues can find soothing.

Additionally, some autistics find their first circle of friends within a drug culture. This was the case for me. I was friendless through high school, but when I started meeting people who smoked cannabis I found it much easier to make friends with them. Many of them also used psilocybin and LSD, so they were used to being around people with much weirder behavior than mine. That first circle of friends even had a method to help me through intense emotions: they’d break out the cannabis, and we’d all smoke until we were happy again—or at least too stoned to remember why we weren’t.

A 2014 research article  in the Journal of Alcoholism and  Drug Dependence relates a case study of a 14-year-old girl with Asperger’s, Sarah, who had an experience similar to mine. Sarah’s parents were unaware of how deeply she had gotten involved in a drug community until she was arrested for selling drugs. It turned out drug dealers had been taking advantage of Sarah, both sexually and as a drug courier. The article says, “She confessed in a very naive manner that she thought these were her first real friends and would do anything to be their friend.”

We autistics may be more resistant to peer pressure, but our social isolation and craving for community can still make us vulnerable to manipulation by others. I was lucky that the social circle of drug users I first fell in with was not so malicious and self-serving as the one Sarah fell in with, but that’s all the difference in our experiences was: luck. Quite easily my story could have gone the way hers did. I was every bit as vulnerable as she was.

Why Do Autistics Have a Higher Risk of Addiction?


According to American Addiction Centers and a Washington University School of Medicine study, autistics are less likely to try alcohol and drugs at all—but those of us who do have a much higher risk of addiction than the general population. A Swedish study found an autism diagnosis doubles the risk of addiction. The 2014 Dutch research article I mentioned earlier conducted a survey of patients in a rehab facility. Using the latest diagnostic criteria, they evaluated 118 patients for autism and found that 6.7% were clinically diagnosable. Compare that to the 1% to 2% of the general population that is diagnosed or diagnosable as autistic, and it suggests that we autistics are over three times as likely to have addiction problems. If you then consider the lower overall usage rates among autistic people, that increased percentage represents a massive leap in addiction risk.

I think there are two big factors at play here: The first should be obvious from the stories in the last section: social acceptance. If we have never had friends and suddenly people are accepting us, “weird and all,” so long as we are drinking (or smoking or snorting or injecting) with them, we’re more likely to spend a lot of time drinking (smoking, snorting, etc.) so that we can spend more time enjoying that social acceptance. The more time we spend in a bottle, the more likely we are to get hooked.

The other factor is a potential biological predisposition for addiction. I don’t want to go too far down that rabbit hole, but you can look at a study that found autistic genetics were more common among both humans and mice who voluntarily drank excessive amounts of alcohol, as well as reading more about the structural differences in autistic brains involved with lower impulse control and disruptions of the dopaminergic regulatory circuits—both neurological traits more likely to contribute to addiction.

What Makes Traditional Rehab Programs a Poor Fit for Autistics?


In a nutshell, almost everything. Rehab programs tend to use group dynamics as part of the treatment. Patients are encouraged to bond, and to help one another through the process. These expectations are unfair to many autistics, who tend to get singled out for social non-conformity, to self-isolate, or get rejected by the group. This affects treatment for autistics who cannot access the model in use.

Another case study in the Dutch article is that of Peter, a 20-year-old undiagnosed autistic. Peter couldn’t complete a task in time for his rehab group therapy session, and then had a meltdown when a staff member interrupted his work. Because he broke windows and threatened a nurse, Peter was kicked out of the inpatient program. When he returned to the outpatient clinic, staff looked more closely and realized Peter was autistic. When the rehab center changed their approach—taking autism into account and changing their behavior to accommodate Peter’s needs—he became cooperative and easy to work with, rather than frighteningly unpredictable and angry.

What Should Autistic-centered Rehab look like?


While the need for autistic-understanding rehab programs is currently largely unmet, some facilities and programs are starting to appear. American Addiction Centers suggests individualizing the program by getting to know the autistic person’s strengths and weaknesses, and giving them opportunities to work alone as well as in groups. Educate staff better about autism. Set a pace that works better with the autistic person’s needs. Use a variety of teaching methods to mesh better with minority learning styles.

Foundations Recovery Network emphasizes the importance of autism acceptance. “The goal isn’t to change these people, but to help them live comfortably within their own skin, so they won’t be tempted to lean on drugs and alcohol instead.” In fact, their program sounds like just what I needed when I first learned about my own autism, even though I wasn’t grappling with addiction issues at that time:
“We don’t attempt to label, brand or otherwise stigmatize people who have Asperger’s syndrome or addictions, but we do try to help people accept their conditions and limitations, so they won’t use harmful substances to mask their pain. The work is hard but it can be quite rewarding, and it could lead to a completely different kind of life for people who have always struggled to connect, to collaborate and to heal.”
But the “innovation” of seeing a person as a unique individual and shaping their treatment program to fit them rather than trying to squash them into the shape of a one-size-fits-all program shouldn’t stop with helping autistic addicts. Every human being is unique. I often feel like the entire notion of “neurotypical” is just smoke and mirrors because every brain is different so how could there possibly be a “default brain type”? Neurotypical is more like a concept that some people’s experience is more in alignment with rather than an accurate descriptor for any single human being.

So let’s reform rehab programs all the way: not just making them autistic-friendly but friendlier to all types of human beings. Autism and addiction creates a “perfect storm” in which two human experiences that are grossly misunderstood and regularly mistreated co-occur. Author Maia Szalavitz, author of Unbroken Brain: A Revolutionary New Way of Understanding Addiction, expressed this beautifully when she said, “with any other psychological or developmental or neurological condition, we’d recognize that human beings are unique individuals.” This intersection of harm suggests that those of us who care about the abuses enacted against autistics in the name of treatment should care about similar abuses against those suffering addiction (and vice versa).

What Can We Do to Stop Addiction Before It Starts?


While there is a strong case for addiction being wired in genetically/neurologically*, author Johann Hari has been spreading the word in the last few years that “the opposite of addiction is connection.”

In his Ted Talk, “Everything You Think You Know About Addiction is Wrong,” Hari talks about the famous cocaine-drinking lab rats. We’ve all heard of them: the rats are offered plain water and cocaine-laced water and they drink so much cocaine they end up killing themselves. But no one until recently had thought of offering the rats an enriched environment. When the rats had a fun cage filled with toys and things to explore, including other rats to socialize with, they still drank cocaine from time to time, but in moderate amounts rather than lethal doses.

I think this is what makes autistics so vulnerable to addiction (as well as many other unfortunate life outcomes): the difficulty we have in connecting with other people. I know I might sound like a broken record, but yet again we see an issue that points back to the importance of autism acceptance. When autistics are encouraged to accept, love, and celebrate who they are, breakthroughs occur. When the people surrounding autistics show acceptance and provide a safe space, allowing autistics to drop their social masks and live more authentically, breakthroughs occur.

Every step toward true autism acceptance is a step away from addiction and a step toward healing.

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*Alastair Mordey, programme director at The Cabin Addiction Services Group, writes that 40% to 60% of addiction cases come down to genetics, saying, “The actual ‘disease of addiction’ almost always pre-exists actual drug use, which may seem illogical. However, that is only because the word addiction is an inaccurate term we use to describe the second part of the illness, the behavioural part.” 

Monday, July 2, 2018

Autistic People Move Differently, Too

hold me closer tiny dancer
Photo © Janine | Flickr / Creative Commons
[image: Photo of a person from mid-thighs down, standing on tippy toes,
wearing red over-the-knee socks spangled with pink and black swooshes.]
Sarah Kurchak
www.riskyfuel.com

As an autistic person who used to work as a personal trainer and fitness instructor, I have a lot of complicated opinions on the way that autistic people are taught to work with their bodies in our society.

I have, at best, a healthy distrust of the way that the fitness industry is currently run for people of all neurotypes, and worry that its focus on aesthetics, weight loss, and dangerous all-pain-no-gain workouts like CrossFit often undermine its potential to genuinely help people. Instead of teaching us to accept ourselves and learn to love and to work with the bodies we have in a healthy and productive way, current fitness trends reinforce ideas of punishing ourselves and pushing ourselves past in our limits in the quest of some superhuman ideal form. And I worry about how this philosophy has the potential to combine with treatments that are focused on on eradicating any sign of autistic behaviors to further alienate autistic people from our bodies, and cause us more harm in the name of ostensibly making up better.

On the other hand, I’ve also experienced some positive changes in my life as a result of my own physical fitness training. Learning how to run—a process which took a few decades and cost me my favorite pair of pink running shoes, as I detailed in a 2016 article for Refinery29—taught me how to connect with my body in a way that I hadn’t known was possible for someone as clumsy and confused as I was. Taking up weightlifting and martial arts helped me to feel better about my body and feel better in it. And I truly believe that, if taught properly and with a great deal of compassion, physical training for autistic people can genuinely be beneficial for us. But it has to be done by caring professionals who have the right idea and the right ideals.

As such, I’m always interested in connecting with thoughtful and at least somewhat like-minded professionals who are still in the field of physical fitness and therapy to see what their thoughts on the matter are—and how their philosophy is reflected in their current work. Which is why I was thrilled to be able to interview MacKenzie DeLoren, BS/MS, OTR/L, an Occupational Therapist who works with autistic children at Laughing Giraffe Therapy and autistic adolescents at a special needs school in the San Francisco Bay area. Here’s what she had to say about her career, nutrition, obesity panic, her own struggles to master certain physical tasks, and how that’s influenced her empathy for her students’ journeys.

Sarah Kurchak: When we were scheduling this interview, you mentioned that my article about developing body awareness well into my adulthood helped you to understand some things about your own development. Would you be willing to talk about your own challenges with sports and physical issues growing up?

MacKenzie DeLoren: I was always that kid who was the slowest runner in the class every time we had to run the mile. I hated team sports because I was always the weakest, the slowest, the clumsiest on the team.

In high school, I was really lucky because our school offered three different types of PE classes to finish our PE credits: team sports, individual sports, weightlifting, and dance. I took dance purely to get away from all of the other things. I knew I wasn’t good at any of those, but I hadn’t tried dance yet. So I ended up in dance and it ended up being … it was probably one of the more humiliating experiences of my life, but it also [made me realize that] if I just do this over and over and over again, I can actually get it. That helped a lot to kind of get a sense of my body.

We had these giant rooms with floor to ceiling mirrors, and having that visual feedback helped me to understand where my body was in space, what it was doing, and what it was supposed to be doing. Having that opportunity for the visual feedback really helped, but I still didn’t feel good about doing any time of physical activity, because I was sixteen and super self-conscious.

When I got out of high school, I found a yoga class through my junior college and I got into yoga through that, just trying to get me out of my head and get me into my body a little bit, because I was so stressed out with college. Yoga actually was where … I remember in your article you said something about how running was the place where you kind of found peace with your body and you started to understand it and get into a little more. That was yoga for me. I’ve been doing yoga for ten years now, and I actually just got certified as an instructor last year. I love it because I feel like similar to how you were in your journey of being able to offer that service to other people to help them get into their bodies, and not judge their bodies in the same way. That’s where I wanted to be with yoga.

Kurchak: What would you say are the most common issues and needs that you see when you are working with autistic clients?

DeLoren: I would say the most common issue is dyspraxia. Dyspraxia is when you have a lot of trouble with motor planning, which is our ability to learn new movements. So it’s not the practicing part of it, it’s the learning part. When you’re introduced to [a new movement], how smoothly can your brain understand what the demands are and get your body to do that?

I would say that’s the number one reason I get kids into the clinic: because of that type of dyspraxia. It causes a lot of other issues, too, with their ability to regulate, and to be able to work functionally in their school environment, and in their home environment, because if you don’t have a sense of where your body is, it’s really hard to interact with anything else.

Kuchak: That’s not exactly the same as what you went through growing up, but does your own history with movement help you to sympathize with your clients? Does it ever take you back to those dance classes in front of the mirror?

DeLoren: Oh, totally. Totally. I have a lot of empathy for the kids I’m working with, especially my high schoolers. I work at a school specifically for kids with autism, and I work a lot with the 14-22 age range over there and I’m definitely like, “Man, I’ve been you. I know how hard this is.”

A lot of our kids are severely impacted by their autism, so some of them have an awareness of where typically developing kids are and some of them don’t. And, for my students who do have that awareness, I’m very aware of how I speak to them about what we’re doing and what we’re trying to get their body to do because I know that’s a struggle. Just having that awareness that “I see all of the other kids doing this and I’m not.” That’s a hard realization for anybody, and I think being in that dance class and seeing classmates of mine do these perfect pirouettes and me just looking like “I can lift my foot off the floor and put it down again…” There is a huge empathy for that learning curve because that learning curve really does feel steep when you’re having a hard time feeling your body.

Kurchak: On the subject of communication and being attuned to your clients’ concerns and needs, there are a lot of autistic people who might not necessarily experience pain in the same way that non-autistic people do, and also autistic people who might not be able to recognize and communicate what they are feeling in a way that is instantly recognizable to non-autistic people. How do you deal with those issues?

DeLoren: It’s interesting that you say that, because I was just working with a teacher on a goal for a student: “She’s going to recognize when something painful has happened to her body on 1 out of 5 occasions.” That kind of thing.

It is actually a goal that we write, because it’s a skill that we have to teach our students that I work with, because they don’t have the innate ability. One of the things that I love about the school is that it’s so strengths-based, and you never say never. You never say “this kid is never going to do this,” because, every time you say that, they’re going to come out of the woods and surprise you.

It is a challenge to figure out [how to explain something like] “Ok, you are probably getting upset with me now because, a minute ago, you slammed your hand on the table and it probably hurt, but you didn’t register that it hurt then, but you know something’s off.” With some of our kids, we can have those verbal conversations.

For those kids who don’t have that awareness yet, or that same verbal comprehension to be able to understand those kinds of conversation, it does end up being more about how we can structure the environment so that it’s as safe as it can be. And then, from there, how can we as staff and teachers help these kids if they do something that does hurt their body and they start getting dysregulated? How can we give them strategies to help them bring their body back to a good place? We work a lot with sensory strategies to calm the body, but we also work with regulation programs to teach those skills of how to recognize that your body is getting pretty ramped up and how can you bring it back down.

Kurchak: As an autistic person who worked in the fitness industry, I’ve often wondered if our repetitive movements and stimming could lead to repetitive strain injuries later in life. Is this something that you’ve noticed or considered at all?

DeLoren: That’s a good question. I personally haven’t seen them yet, but I also work with kids. As you age, you would probably get into those a little bit more. If you’re working with a geriatric autistic population, then that would probably show up a little more frequently.

I have a lot of guys who jump around on their toes a lot, and I love seeing how their musculature has developed. I have one guy who is always bouncing on his toes and his arms are scrawny and his legs are like … he never misses leg day. He has such defined musculature in his legs because of that type of stim and I do wonder if it’s… this is all hypothetical, because I have no research on this, but I do wonder, if it’s a behavior that started in childhood, if he developed the musculature to support that, maybe that could actually prevent you from getting a repetitive strain injury. But if it’s something that you start later in life, after your body has finished developing, maybe that would compromise it?

But I don’t know about that, because a couple of our kids can do these hypermobile things with their fingers and I haven’t seen them get dislocated. But again, I’m working with pediatric populations, so arthritis, that kind of thing where you have repetitive wear and tear on the joint, that’s going to show up later in adulthood. So I don’t know. That’s a really good question.

Kurchak: Something else I’ve noticed in fitness is that most training programs developed for autistic people are based around a fear of obesity, and that any other goal or need that isn’t specifically about making autistic people thinner tends to be ignored or pushed to the side. Is this something you’ve seen at all in OT?

DeLoren: I feel like that’s a thing in health care in general right now. Any time there is any potential risk of obesity, everybody just loses their minds and focuses on that instead of any actual health concerns. It’s awful that we are seeing that kind of fat shaming progressing into our work with children, who should be told that they are beautiful and wonderful all time. Kids grow best when they receive positive feedback as opposed to “ooh … I’m really scared that you’re gonna get fat!” That’s really awful to hear as a child. It’s awful to hear as an adult, but especially as a child.

I do think that the fitness industry is hyper-concerned with obesity, and we do see that concerned mirrored in the medical field as well. I am predominantly in the education field, as most of my time is spent at a non-public school specifically for student with autism. A lot of concerns in education right now in terms of obesity are that kids are sitting for too long and not moving enough. This is an issue that we've pretty much brought upon ourselves with the ways we've set up our schools. P.E. times and recess times have been cut or pushed back as an increased focus on academics has surfaced. The long-term issues of this type of sedentary lifestyle include obesity, but plenty of short-term issues also emerge. We see increased distractibility, behavioral issues like not following directions or acting out, emotional regulation issues like aggression or crying, and poor performance on academic tasks (including testing). In our quest to address obesity in schools, we have the opportunity to correct all of these other issues that we're creating as well.

The school I work at is kind of unique, in that its goal is for our students to live engaged and productive lives. Instead of having several hours of sitting work for our high schoolers, they change work stations every fifteen minutes, so there's a walking break built in right there. They have 30 minutes of PE every day, not just once or twice a week. They go for trail walks (30-45min) every other day, and they go on community outings for several hours every week. They have access to three different play structures, four hammocks, and bikes whenever they need a break. They participate in campus clean up every week and we have seasonal gardening activities as well.

While these activities aren't all traditionally "exercise" they do get our students out and moving around. We refer these types of activities as "heavy work" and are a way to help our students regulate their level of alertness and their emotions, but they have the added benefit of being physically healthy on top of being emotionally healthy. If more schools were able to incorporate this kind of hands-on learning approach, we would probably see a decrease in our obesity rates because we'd be establishing healthy movement habits right from the start.

So many of the clients that I work with are very picky eaters and they’ll only eat certain foods. So I think that, from the OT perspective, we come at it less from a fear of obesity and more from a nutritional standpoint. Are they getting the vitamins and minerals they need? I do see the concern with the nutritional aspect because of those super hypersensitivies to different textures and different flavors and that kind of thing. There is a pretty limited diet that some of our kids have. And so many of our kids can’t swallow pills, so they can’t take vitamins.

Kurchak: Swallowing pills is still a challenge for me.

DeLoren: It’s a really big challenge.Thankfully we have gummy vitamins, which are really good for a lot of our kids because that chewiness is actually really good for proprioception in the jaw.

Kurchak: I’m actually taking gummy vitamins now.

DeLoren: They’re great! And they make them for adults now. Which is really good, because we’re seeing that, with those types of supplements, we can start getting more of that nutritional part, that little piece of the puzzle can start to get worked out. There is starting to be more research into gut issues with autism, and whether or not you’re able to process the stuff that you’re taking in. How you’re processing it seems to be different if you have autism vs if you don’t have autism.

I personally have not read a ton of research on that yet, but I do know that it is being conducted right now.  I think that we’ll probably see some more research into that and the viability of those things in the next few years.

Kurchak: You mentioned earlier that you were recently certified as a yoga instructor. Has that training influenced your OT work with autistic people at all?

DeLoren: I think it definitely has. I frequently incorporate breathing exercises into my self-regulation training with my kids. I have one kid in particular where yogic breathing and diaphragmatic breathing, in addition to pursed lip breathing, helps him calm down a lot. And when he can’t get into that, he will engage with me doing basic stretching exercises because that gets him into his body a little more. This is a kid who struggles with anxiety to the point where he will walk into a room and we can’t tell what it is that has set him off, and he can’t communicate it with us, and he will just start bawling and yelling and running all over the room because he can’t sit still because something has gone wrong. His anxiety’s through the roof. So the fact that he can, in that space, where the nervous system is totally fight or flight, be able to still have that awareness to breathe through pursed lips—and that brings him down—is huge.

Also, part of my training as a yoga instructor incorporated a little bit of Thai massage. Thai massage is also called lazy man’s yoga, which is really wonderful for my guys who can’t their bodies into a position, but I can help them get their bodies into a position and I can keep my body safe moving their giant limbs around. Because I’m working with six-foot-tall guys who are twice my weight. So I can keep my body safe when I’m helping them get into those positions that are going to help open the hip, or are going to open up a little into the shoulders. It’s going to get their hands to work a little better so that they can do academic work, that kind of a thing.

And, for my kids who are more aware of the outside world and their interactions with people, I do talk a lot about kindness to yourself and thinking good thoughts for yourself before you can treat others with kindness. A couple of my kids have stims where they’re hitting their heads or [other] self-injurious behavior and, whenever I’m trying to encourage them to stop, I remind them you have to be kind to yourself to start with. That’s the baseline. The important part is that you love you. And then you can love other people.