Sunday, July 29, 2018

The Protective Gift of Meltdowns

Maxfield Sparrow

Photo © 2017, Maxfield Sparrow
[image description: a turtle in the middle of the road on a hot, sunny day.
His skin is dark with bright yellow stripes and his shell is ornate,
covered with swirls of dark brown against a honey-yellow background.
The turtle is rushing to get across the street and his back leg
is extended from the speed and force of his dash toward freedom.]
I hate meltdowns. I hate the way they take over my entire body. I hate the sick way I feel during a meltdown and I hate the long recovery time—sometimes minutes, but just as often entire days—afterward, when everything is too intense, and I am overwhelmed and exhausted and have to put my life on hold while I recover.

I hate the embarrassment that comes from a meltdown in front of others. I hate the fear that bubbles up with every meltdown. Will this be the one that gets me arrested? Committed? Killed?

Meltdowns, Like Shutdowns, Are Harmful But Necessary

We Autistic adults and teens put a lot of energy into figuring out what will lead to a meltdown and working to avoid those things whenever possible. Parents of younger Autistics also put a lot of energy and work into figuring these things out, both to try to keep triggering events out of their child’s life, and to try to help their child learn how to recognize and steer around those triggers themselves. Outsiders who don’t understand autism will make accusations of being overly avoidant and self-indulgent, and accuse our parents of spoiling and coddling us.

I have written about how shutdown can alter brain function in unwanted ways. Meltdowns also have their dangers, and can alter brain function over time. A meltdown is an extreme stress reaction, and chronic stress can damage brain structure and connectivity.

But meltdowns serve a purpose, just as another unpleasant experience that can also re-wire the brain if it continues chronically and unabated—pain—also serves an important and very necessary purpose.

Pain is an alarm system that helps us avoid bodily damage, and urges us to try to change something to protect our body. While pain is usually unwanted and something we seek to avoid, without pain we would not live very long because we would not have such a strong drive to eliminate sources of damage to our bodies.

Meltdowns are alarm systems to protect our brains.

That idea is so important I gave it its own paragraph. And I’ll say it again: without meltdowns, we autistics would have nothing to protect our neurology from the very real damage that it can accumulate.

So often, I see researchers and other writers talking about meltdowns as if they were a malfunction or manifestation of damage. I strongly disagree. It is easy for an outsider to view a meltdown that way, because all they see is an unpleasant outburst that makes their lives more unpleasant or difficult. They see someone who appears to be over-reacting to something that they don't consider such a big deal. They see someone "immature," someone who needs to grow up, snap out of it, or get a “good spanking” to teach them to behave.

When a person doesn’t themselves experience the hell of having a meltdown, that person can easily misunderstand and misjudge what it actually happening.

Meltdowns Are A Normal Response To Sensitivities

Let me ask you something (this is a thought experiment and you don’t have to actually do this, but you might understand me better if you follow along physically): Take your finger and poke the softer flesh on the inside of your thigh with it so that you are pressing the tip of your fingernail into your thigh. Don’t actually damage yourself! You’re just looking for a reference sensation. Poke it about as hard as you might press a button to ring someone’s doorbell.

If you have long, sharp fingernails that might have hurt a little bit (I hope you were careful. The goal here is not to injure yourself—just to create a physical sensation.) It was a quick poke, so it probably didn’t even leave a mark behind, no matter how long your fingernails are.

Now do the same thing to your gums, either above or below your teeth, in that area between your teeth and the inside of your lips. Oh! You couldn’t even poke it as hard, could you? (Do be gentle with your gums, please. I repeat, this is not about harming yourself. You don’t even have to poke yourself at all if you don’t want to. You know your thighs and gums.) You know, without lifting a finger, that I am telling you the truth when I say your gums are much more sensitive than your inner thigh.

And you are not “over-reacting” when you have more pain response in your gums than in your thigh, right? It’s easier to hurt your gums, so your reaction to the same stimulus is much more intense when it is applied to your gum than to your thigh. You are not self-indulgent or spoiled. You don’t need a good spanking to get over how sensitive your gums are. You just need to take extra care that things don’t poke you in the gums.

So what’s my point? If you are not Autistic—and even more so if you are pretty close to neurotypical —your neurological wiring is more like your thigh. Life pokes at you a lot, and you don’t even notice it. Much of life’s poking is fun for you. Some pokes are less recreational, but present satisfying challenges. So when you see an Autistic person having a meltdown you might not even recognize the pokes they have been processing all day long, because you as a non-autistic person don’t even feel them.

But our Autistic neurological wiring is more like your gums, except not even that predictable. Some of our senses may be “hyporesponsive,” and we need to stimulate them to be aware that they are even functioning. Some of us spin around, or pace in circles. Some of us move our hands or fingers in ways that make us feel better. Some of us blast loud music with a heavy bass and drum component to it. Some of us rock back and forth. Our wiring demands more input than the world’s regular pokes can give us.

Some of our senses are “hyperresponsive”  and we need much less stimulation. Life’s pokes are like fingernails grinding into our gums and we need to make it stop because we cannot bear the pain. Loud sounds or high-pitched sounds get to some of us. Others are overwhelmed by the struggle to understand speech when more than one person is talking at the same time. Some can’t stand textures of fabrics, or foods.

Most Autistic people I know experience a complex mixture of hyporesponsiveness and hyperresponsiveness. Most have some senses that are both hypo and hyper responsive, changing over time. I can’t give you any single idea of a sensory pattern for an Autistic neurology, because we each have our own combinations of needs.

Normal Human Variation Includes Variant Emotional Sensitivity Levels

But when it comes to meltdowns, it’s not just sensory input (or lack thereof) that will set off an Autistic’s neurological warning system and throw us into meltdown. What inspired me to write about this topic was reading something I had written last year, after spending a few months living in an emotionally abusive situation. The man I was living with figured out very quickly how to manipulate my compliance triggers; he even commented specifically on how easy it was for him to physically subdue me once he spotted the compliance “fish-hooks” that childhood had left embedded in me.

I’m not going to go into much detail about what he did, for the same reason I shy away from going into much detail about my decade of childhood therapy: I am working on removing those hooks from my flesh. The last thing I want to do is instruct others as to where those hooks are embedded, and how to use them to steer me like a puppet.

My only point in mentioning my abuse is that I realized—after the fact—that my meltdowns had been sending me a very clear message, one I should have heeded immediately. Instead, I did what I always do: I interpreted my meltdowns as a sign of how damaged I was, and how much I needed help to gain self-control. Most of my life, I’ve allowed lovers to convince me to try to medicate my meltdowns into submission. I hated those meltdowns, because they seemed to illustrate how flawed and awful I was. My thought process went like this: I melt down because I’m Autistic and meltdowns are frightening and horrible and who would want to be my romantic partner? I can’t blame people for treating me badly and wanting to get away from me, because look at these meltdowns!

My experience last year helped me to finally realize that I was looking at things backwards.

I don’t melt down because I’m Autistic.

I melt down because something in my environment is intolerable, and I am having a normal reaction of pain and/or anxiety. That pain can be from something physical, like an intolerable temperature in the room or a sound that is piercing my eardrums and making me nauseated. Or it can be something emotional, like internal feelings of frustration or external abuse.

Everyone has meltdowns. It’s not just an Autistic thing. But our wiring is different, just like the wiring is different between your thighs and your gums. Some things that make neurotypicals meltdown don’t bother me. A whole heaping lot of things that don’t bother neurotypicals make me meltdown terribly. I’m not deficient in some way; I’m wired differently.

Meltdowns Protect Us From Harmful Situations and People

One of the things I learned last year is that, even when I can’t recognize abuse because I have alexithymia, and even when I can’t recognize abuse because my compliance training is kicking in full-force, my body and nervous system will send me the message via repeated meltdowns.

What I wrote a year ago:
"If I have lots of shouting, freak-out, PTSD meltdowns when we spend time alone with each other, yes it’s an Autistic thing. But it also means you’re regularly doing something messed up. 
"An isolated meltdown could just be a random convergence of awful that has nothing to do with you, but if a pattern develops, you’re probably gaslighting me, mistreating me, abusing me, or generally taking nastily unfair advantage of that same Autistic neurology that makes me unable to recognize I’m being abused or mistreated until I see the pattern of meltdowns. 
"All my life I’ve been told, and believed, that losing my shit was a personal shortcoming I should work to overcome. 
"I now realize it’s actually my body/brain’s alarm system letting me know something’s seriously wrong in my life. Something bad that needs to be fixed, like yesterday, if not sooner. 
"I finally realized all this today. Everything suddenly connected. 
"And in an instant, I no longer hate my meltdowns. I think I might actually love them. They protect me.
So… I still do hate meltdowns. More specifically, I hate having meltdowns. They are hard on me, physically and emotionally. They are embarrassing, messy, frightening.

But I am grateful that my body has a way to tell me when I’m in a bad situation, even if my mind is not capable of figuring it out yet. I vow to respect and honor my meltdowns. This is not the same as excusing my behavior. This is not the same as giving myself free reign to do whatever, whenever.

I still want to do whatever I can to avoid having a meltdown. I still want to work on my ability to detect a meltdown on the horizon, and remove myself to safety before things go too far.

But I also vow to listen to my meltdowns and pay closer attention to my triggers. Meltdowns teach me what my nervous system can handle and what is too much for me. Meltdowns teach me how to take care of myself. Meltdowns teach me what my nervous system needs. Meltdowns highlight areas of my life that are not on track.

Sometimes my depression shows me that something is wrong in my life, but sometimes depression is just like a wildfire, burning out of control. The same is true of my anxiety. But I have learned that meltdowns are always highlighting something I need to address.

Meltdowns protect me. Some aspects of my neurology make me more vulnerable. Some remnants of childhood experiences leave me more vulnerable. Meltdowns fill that gap and send me messages about my life that can help me protect myself.

While I will never enjoy having a meltdown, I promise I will always value the protective gift meltdowns bring me

Thursday, July 26, 2018

#AutisticWhileBlack: Diezel Braxton And Becoming Indistinguishable From One's Peers

Kerima Çevik

The author's idea of what displaying autism positivity looks like
[Image: a Black woman over 50 with braided gray hair wearing
Neurodiversity 3.0 by ThinkGeek, a black T-shirt with a world globe
 design on the upper chest area in the shape of a human brain,
colored in physical map fashion i.e., water is colored light blue
 and land masses green, clouds white, looking to her left
 over bent wire-rimmed glasses in that way that mothers look at
 their children when an outrageous behavior has just ensued.]
There is an article in a paper called The Daily Net, about singer Toni Braxton's 16-year-old son Diezel working as a professional model for the past two years. The article refers to him as "formerly autistic." It goes on to say he has, "fortunately, moved past" autism and is now a celebrity himself.

Apparently, when her son was thirteen, Ms. Braxton was told he no longer met the criteria for autism. According to the article, she goes on to say:

“I am one of the lucky parents. Early diagnosis changes everything. I will tell you this. I will shout it from the rooftops. My son Diezel is off the spectrum. Off the spectrum being autistic.”

I beg to differ. There is no cure for autism.

Autism is a neurological divergence that doesn't just go away. One doesn't "move past" the wiring of a brain that has obvious neurological and physical differences. Calling current interventions for autism "treatments" is a misnomer that confuses parents. These interventions do not cure autism. They suppress visible signs of neurodivergent minds, forcing a type of behavioral code-switching that allows an autistic person to appear to navigate the world around them, such that they blend in with nonautistic peers.

This is not a cure. The price paid when forced training in compliance and the suppression of coping mechanisms is pursued—instead of investigating and addressing the root causes of coping mechanisms and misunderstood behaviors—may later manifest later in "formerly autistic" adults as mental health challenges, and PTSD.

A parental demand that Diezel should not display any sign that he is autistic has been issued for public consumption, from a mother who has no understanding of being autistic—except to view her son's brain as an enemy he must fight, and defeat. Is telling your adult son to hate his own brain, and how it works, a good thing? This sounds more like the very definition of how internalized ableism happens.

Toni Braxton would not tell her son that his melanin and hair are abhorrent things that he must combat and chemically suppress so he can be "indistinguishable from his white peers." I wonder why its okay to tell him to hate the nature of his own neurology? Most of the innovations, discoveries, and creative artistry in this world came from neurodivergent minds. Nina Simone was bipolar, as were many other great musicians. Many creative people are autistic. Presumption of a cure when the symptoms of a divergent mind are no longer apparent deprives neurodivergent individuals of their future rights to critical mental health, and other supports they may need to access going forward.

It is truly harmful to hold up an autistic teen and call him "formerly" autistic. If he has trauma, anxiety, or any future issues, his own mother's insistence that his lifelong disability is gone might lead him to hesitate in seeking help, to feel inadequate, to feel unable to request critical accommodations and supports that might significantly improve the quality of his life—or save it.

Diezel is the son of a celebrity, so his life is at this moment might appear significantly better than that of his African American peers. But this path of using an incorrect term for his becoming indistinguishable from his peers is dangerous to our community, and wrong.

Toni Braxton's type of rhetoric, along with parading her teen son around as inspiration porn, could have other parents exerting increased pressure on their own offspring to be "formerly autistic"—and if those young people have a degree of disability that makes becoming indistinguishable from their peers unrealistic, it could irrevocably harm them.

The author's idea of an autism positive autistic male model. 
With permission, and yes, we have matching Neurodiversity 3.0 
t-shirts. He is wearing his, bought deliberately 
large because the collar would disturb him otherwise.
 The photo matters because it defies professional
assessments of his degree of disability.
 He is facing me while I'm photographing him,
 he's looking right at me, and he's sending a
kiss in my direction. 
[Image of a multiracial teen with curly hair
at a table in a black t-shirt with a
drawing of a human brain
colored to look like a physical map of the world
 with the word Neurodiversity in all caps
 and green lettering beneath it.
A refrigerator can be seen in the background as
can parts of a sitting room behind him. © Kerima Cevik]
The crushing element of structural ableism, which breeds internalized ableism when nurtured by this type of parental gaslighting, may have emotional consequences at a later time in Diezel's life, and that truly concerns me. His mother clearly hates the autism label, and views autism in the same way she views the Lupus diagnosis she carries. I wonder how this has informed his identity and his sense of self-worth? I wonder if Diezel has been assessed for conditions like prosopagnosia, synesthesia, or auditory processing disorders? Has he been tested for Ehlers-Danlos Syndrome (EDS)? These common autism traits and co-occurring conditions are rarely tested for, or addressed, in African American autistic populations.

As African Americans, we are forced to code switch, to suppress African American Vernacular English (AAVE) and cultural differences that make us who we are—unless those differences in language and manner have already been culturally appropriated. Ebonics is still deliberately treated as something less than acceptable. It is still a major issue when natural hair is worn to school, or work. It is still a risk when AAVE is used in traditional work settings, or public spaces. The suppression of Black identity that necessitates code-switching to gain employment perpetuates structural racism. This type of racism has been exposed, deconstructed, and understood to be harmful. We now insist on being ourselves, and this has direct positive effects on the acceptance of our own Black identities. This reduces internalized racism and has created an entirely new generation of young Black activists who are able to continue to fight for the basic human rights we deserve as African Americans.

Toni Braxton's celebrity, and her wrongheaded understanding of autism, have been used for years to muddle the African American community's attitudes about autism. She allowed herself to be used to present autistic brains as things to be eradicated, and this is unacceptable. Her attitude sets up a dangerous mentality that is unsustainable, as you cannot eradicate your child's brain.

Braxton has been vocal and public in her portrayal of autism as a disease to be suppressed and defeated, rather than as a lifelong disability, and this has had a devastating impact on how our people view their own autistic children. We have a disproportionate number of autistic high school graduates who could succeed in college with the understanding that supports exist to help them navigate university life on every college campus. Our community views autism as a mark of shame, an embarrassment, and celebrity parents like Ms. Braxton continue to be instrumental in perpetuating these attitudes of ableism that hold multitudes of autistic youth back, when her intention appears to give our people some sort of hope and inspiration.

It is time to make the harm Braxton is causing clear, and speak up for the sake of so many autistic young adults and teens who live with self-loathing in part because of celebrity parents who inadvertently gaslight them with the attitudes that the things that make a young person autistic must be code switched off, suppressed—and who they really are must be either hidden away, or eradicated.

The average life expectancy of an autistic person is 36. I would argue that what makes navigating this world as an autistic person so risky is not just being autistic; it is the way every layer of society bakes ableism into the structure of autistic lives, such that from childhood to adolescence it becomes internalized, and increases risks of harm. We parents have to stop contributing to this cycle of loathing and alienation with misinformation, myths, and false narratives. It's time we understand the impact that our words and actions have on our children, and on the entire autism community.

I can't keep Toni Braxton from misinforming the public about her opinions on autism or her son. I can't keep her from continuing to speak about him without him, although he is now a celebrity in his own right and supposedly capable of speaking for himself. But what I can do is point out what is wrong about her behavior, and the damage it is doing. What we can all do is recognize what Braxton is doing, and not pave the road to autism hell by allowing ourselves to be led by celebrity or personalities. We need to seek peer-reviewed factual knowledge of what autism is, and understand how we can facilitate a better life for our children, by arming them with accurate, empowering facts.

Tuesday, July 24, 2018

Why I Do Not Hate Autism

Photo of a white woman with straight shoulder-length  dark brown hair. She is looking to her left, and smiling.
Shona Davison. Source: Author
[image: Photo of a white woman with straight shoulder-length
dark brown hair. She is looking to her left, and smiling.]

Shona Davison

I do not hate autism. Sadly, many people do, including some autistic people. Recently I saw a post in a Facebook support group for autistic people. The original poster said that they hated autism and gave a list of reasons why. Many others agreed in the comments. There was almost relief that someone had said it. Autistic people sometimes feel like they are not allowed to say such things. In the comments many autistic people explained why they hate autism. The reasons were mostly to do with how difficult their lives are. I didn’t comment as I recognise when people need to vent, and arguing would not have been supportive. However, I found the thread extremely upsetting. I hate to see people suffer and this thread was evidence that many autistic people do indeed suffer.

One of the things that bothered me about the thread was I do not think their hatred was directed in the right place. Their comments suggested that they hated that their lives are so difficult. Are their lives difficult because of autism?

Life is difficult for me as an autistic woman. I’ve spent most of my life being criticised or rejected because of perceived social failings. It is difficult trying to keep up with conversations because my brain processes information more slowly, and people don't realize I need a few extra seconds to reply. It's difficult being in sensory overload because fluorescent lights exist (they wouldn't if autistics were the majority). I put in extra effort compared to most for every outing, every social interaction, everything I do, yet I still do not meet the appropriate ‘standard’ as defined by non autistic people. I get more tired and stressed from this extra effort, so I need more downtime. But if I take more downtime I am perceived as lazy. Yet if I don’t have downtime, I have anxiety attacks or meltdowns and I’m considered not to be "resilient." All of this means my life is difficult—more difficult that it would be if I were not autistic.

Many autistic people have really difficult lives through no fault of their own.

I therefore understand why some autistic people want a cure. But my view is that those people are putting the blame for their problems in the wrong place. If we blame autism, which is an integral part of us, the consequence is that we try to change ourselves for a better life.

I do not believe it is possible to be a happy autistic person whilst trying to behave like a non-autistic person. It is futile. Even if we are successful at ‘fitting in’ for many years, there is usually a price to pay in the long run. We will always stand out as different to some extent and for some of us the effort involved in acting ‘normal’ will kill us.

In my view, the blame for most of the challenges we face should be placed in our environments.

I’m autistic, I’m always going to be autistic. Whether or not I am happy depends on external factors such as the people around me, my physical environment, the type and amount of work I do. I believe that accepting this is key to wellbeing.

I have had more success improving my life once I stopped focusing on changing myself, and instead started to look at my surroundings. As my knowledge about my own brain and my own needs has increased, I have been able to educate my family and friends. I say ‘no’ to work or social events more often, so that I get the downtime I need. Our house has dimmer switches, headphones, weighted blankets, a mini trampoline, and so many stim toys. Changing our environments is not necessarily a simple task, but for lots of us autistics it is far easier than long-term masking. Research shows it is also less dangerous to our mental health. I believe it is more likely to result in happiness too, but how to be a happy autistic person is not a priority in autism research, so that is just my personal view based on my experience.

For those of us who are able and willing to go that step further there is a lot of work to be done changing wider society. Professionals need educating; laws, policies and diagnostic manuals need changing; public spaces need to be more sensory friendly.  But one step at a time—changing our immediate environment needs to come first.

I have seen some autistic people argue that blaming society for our difficulties is shirking personal responsibility and that we should be aiming to ‘improve’ ourselves. This stance says a lot about their conceptualisation of autism: If one sees autistic people as deficient or lacking in some way compared to non-autistic people then it is understandable that one would believe that acting more like a non-autistic person is "self-improvement."

I do not see autism that way at all. All humans learn and develop over their lifetime, and that is a positive thing. Why should autistic people be any different? It should be obvious that autism acceptance is compatible with personal development. I saw a really lovely phrase on Twitter once: "We do not grow out of autism, we grow into it."

I do not just accept I am autistic, I embrace it.  Autism is intertwined into every part of me and influences everything I do and feel.  I would not be me if I were not autistic, I’d be an entirely different person.

Do autistic people suffer? Sadly yes, lots of us do. Do we suffer from autism? No, I do not think so. That is why I do not hate autism.

Wednesday, July 18, 2018

In Silence and in Sound: Autistics Do Not Benefit From Presumptions of Deficit

Photo: Ian Chen | Flickr / Creative Commons
[image: Close-up black-and-white photo of a young East Asian child,
with one finger over their lips in a position indicating "hush."]

Maxfield Sparrow

When an academic writes accurately about aspects of autistic lived experience, some people grumble. “All they needed to do was ask me and I would have told them,” some will say. “We've known this for years but they act like it’s a shocking new revelation,” others might add.

I, however, rejoice. Formal confirmation of autistic common knowledge is exactly the kind of research we need out there. I am so happy when an academic paper states the obvious (at least obvious to us autistics) because it means there is finally an information source that “the system” will respect. Do I wish people would actually listen to actual autistics? Most definitely, I do. But until we manage to shift that Overton window halfway across the wall, I rejoice to see our actual life experiences written about accurately in scientific journals.

I was especially thrilled reading Rebecca Wood’s research, recently published in the journal Educational Review. In her article, “The wrong kind of noise: understanding and valuing the communication of autistic children in schools,” Woods uncovers something we autistic adults have been complaining about for so long: We are not “allowed” to do the same things non-autistic children do. They are allowed to be so loud we cannot bear to be in the same lunchroom with them, but we are silenced if we are even a fraction as loud as the non-autistic people.

We’re relegated to a lesser status wherein we’re expected to quietly tip-toe through life, while forced and shamed into putting up with the sensory onslaught of the “normal” day-to-day noise of others.

Woods studied children in five different mainstream primary schools in England over the course of five months, and observed that autistic children were regularly treated differently with respect to noise and communication. She titled her paper “The wrong kind of noise” because she noted that it didn’t matter whether autistic children were complying or not and it didn’t even matter if the autistic children were being loud or silent: no matter what the children did or did not do, they were viewed as making “the wrong kind of noise” because their autistic sounds, autistic communication style, and even autistic existence itself was “disdained” by the adults in charge.

In her study, Woods found that “communication, noise, and silence all intersect in relation to autistic children in schools.” She saw that all the schools had put the development of communication skills high on the list of important interventions for the children, but the way these interventions played out in the daily school life of the autistic children shaped how the children communicated—often in unplanned-for ways, often in ways directly detrimental to developing communication skills.

Woods goes on to describe concrete examples, like a child she calls Piotr (all names in her study are changed) who expressed 39 verbal and non-verbal signs of aversion to an activity the teaching assistant was trying to engage four-year-old Piotr in. Piotr said no, said he wanted to go outside, tried to hold the book closed, slipped to the floor, and more—all clear indicators of not wanting to do the reading assignment. Yet the school said Piotr was “non-verbal” and one result of that (inaccurate) label was Piotr’s voice going ignored. At one point Wood observed Piotr using a choice card to directly request outside time, but instead of respecting and rewarding Piotr’s communication, the teaching assistant removed Piotr from the choice card area, trying to re-focus him on a different task.

Wood says it was unclear whether the teaching assistant was actually ignoring Piotr’s communication or just wasn’t picking up on it properly, but the end result is the same. As wood writes, “It is difficult to ascertain [...] how Piotr’s independence and communication are being supported,” adding that, “it seemed here that his communication was only validated if it corresponded with what the adults in charge wanted to hear, and in the ways that they expected to hear it.”

In one of the most heart-breaking yet validating sentences I’ve ever seen in an academic paper, Wood writes, “it appeared that the unwitting aim of these communication supports was to tame, train and civilise him.”

This critique of the way education systems are currently functioning is so important. Wood’s study was conducted in England, but the problems it highlights trouble education systems everywhere in the world. Supports are not enough. Access is not enough. Accommodations are not enough. Education is not enough. None of it is enough if the person being supported is not being given adequate personalized assistance. You cannot support a student if you are not primed to listen to them, hear them, and connect with them by showing that their communication was received and taken seriously. Without some hint of personal agency, what encourages a student to make any effort at all? The system is set up to generate learned helplessness and resignation.

Rebecca Wood writes about issues of noise as well. Schools were very noisy environments, even for Wood who may not be as sensitive to noise issues as the autistic students with sensory issues. (Although I’m just guessing here. I have no idea what Wood’s neurotype is.)  She wrote, “when I was transcribing interviews, which were often unavoidably conducted through various interruptions and types of racket, I couldn’t always hear what the participants were saying  because of the general din from talking and the scraping of chairs.”

Silence, on the other hand, was a clear sign of autistic engagement. For example, when Piotr was allowed to choose his own book, none of the aversion behavior was evidenced and instead he quietly read, fully engrossed in the book (and demonstrating his approval with 44 approving behaviors in fewer than 5 minutes).

I know a big, sarcastic “well, of course” is due, but this is exactly the kind of stuff that really needs to be documented in an academic study, because that is the way to get autistic curriculums changed in ways that will benefit autistic students. It’s hard to get educators to listen to autistic adults, which means we need scientific studies that “signal boost” the things autistics have been saying for many years. It’s frustrating, knowing we autistics are not listened to. This paper represents the kind of science that will get us heard. However indirectly that listening has to take place, the important thing is to be heard, in any way that works.

Staff at the schools where Wood observed were visibly irritating the autistic children when the students would go silent by whispering questions to the children, or feeding them a steady stream of spoken words in an attempt to expand their vocabularies. The children’s silence was being just as misinterpreted as their spoken and visual forms of communication. The teaching activities flowing from those misinterpretations risk harming children.

So much of what Wood’s article comes down to is the importance of presuming competence. Wood shows how giving a child the label “non-verbal” (whether accurate or not) causes staff to work with that child differently, including ignoring massive amounts of communication from the child because the adult has been primed to behave as if “non-verbal” means “never communicates.” Wood rightly calls this “confirmation bias” and writes that these “deficit-oriented discourses” are damaging to children.

Hopefully, Wood’s research works its way into the hands of those who can make positive changes in the educational systems that serve the needs of autistic students. It is refreshing to read research written by someone who really seems to see and hear us. It’s time for an autism research renaissance. We need more researchers like Wood: researchers working with and listening to autistic subjects, resulting in findings that genuinely improve the quality of life for autistic people.

Saturday, July 14, 2018

Book Review: The State of Grace, by Rachael Lucas

Elizabeth Bartmess

Book Cover via
[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.


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.)


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.


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.


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.


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
[image: White earplugs resting in a black box with red sides.]
Jeff at Spectrum Disordered

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.


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,, 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.


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

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?


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.

*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

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.