Posted in information, sqt

{sqt} – internalized ableism

I’m joining the quick takes link-up today at This Ain’t The Lyceum with a rather more serious topic than normal. Head over there for the rest of the regular varied line-up.

Disability is innately challenging in various ways (hence the term disability), but it is also socially challenging because the surrounding culture is not designed to accommodate disability, typically misunderstands, and frequently actively stigmatizes it. When a person in a wheelchair can’t navigate safely down the sidewalk because someone left one of those electric rentable scooters lying across the width of it, for example, that is a challenge posed social ignorance and carelessness, not an inherent challenge of the disability. When people assume that a disabled person’s life will be less meaningful, less joyful, or less worthy, just because of the disability, that stigma and misunderstanding add a significant challenge that is not actually part of the disability itself: the burden of proving oneself to the community instead of having one’s potential and value automatically acknowledged. And in the face of that assumption, repeated over and over again, the disabled person may even begin to believe it themselves, in what is called internalized ableism.

I can really only speak for myself and the disability I know well, autism. But for me, internalized ableism is:

  1. …scratching my arms till they bleed because it’s more subtle and socially acceptable than flapping my hands in the air and I really just don’t want anyone to notice that I’m different and struggling here, please. (Just realizing this and giving myself permission to flap and stim in other more obvious ways has reduced my self-injurious stimming a lot, actually.)
  2. …laughing at everything that is probably a joke so that I’m not the clueless person who doesn’t get cultural humor. (I laugh when I’m nervous or overwhelmed too. I hate this. I hate that my emotional responses don’t match up to what they “should” be and I have hated it ever since an adult got angry with me as a kid for laughing in an “inappropriate” setting. Internalized ableism is often learned through emotionally significant childhood events; it often speaks to the heart with cruel, cutting hate.)
  3. …acting like I know things, even if I’m not totally sure, if it seems like everyone else knows already – only admitting ignorance if someone else does, because then I’m not the weird one who might not be worth bothering with.
  4. …believing I can’t serve God in any meaningful way because I’m too anxious to build relationships and share the Gospel with my neighbors/coworkers/homeless people/etc.
  5. …trying to get my kids to act “normal” instead of helping them live fully into the way God made them, disability and all, because I secretly (subconsciously?) think displaying their disability will hurt their chances of friendship, community, inclusion, and happiness.
Limerick standing at the edge of a lake, arms raised mid-flap. I never want him to think he has to stop his excited flapping to fit in and make friends. I never want to cut out his natural and beautiful expression of happiness, and in so doing damage the happiness itself. So why do I try so hard to do that to myself?
  1. …doing everything on my own without asking for help, because I think asking for help for disability-related reasons either means I’m a useless burden on the relationship or lazy and immature and relying on my disability as an excuse.
  2. …assuming that the people I do rely on (particularly my husband, at this season of life) resent me or see me as a burden, or would do so if they understood the reality of my disability. I felt this years before I had a diagnosis: I knew that I was different, that I didn’t process things “normally”; that I had struggles no one else I knew had; and I thought this made me deficient and broken and that anyone who really knew me would stop loving me because it would be too much work. And that is just with Level 1 Autism. I can only imagine how internalized ableism, if not actively combatted, could bring down smothering waves of anxiety and depression on someone whose support needs are higher, either physically or emotionally.

In short – internalized ableism can rob the disabled person of joy, shut down their authentic self-expression, replace their faith and hope with fear and despair, and reduce the blessing and the gift they can be to the communities they are a part of. I don’t have a great solution for eradicating it, and I think it can only be done hand-in-hand with eliminating more generalized ableism in society – disabled people are going to pick up on the attitudes others have towards them, and especially as children can easily internalize those attitudes.

The following chart is, however, a well-written, sensitive, and helpful guide for evaluating your own attitudes toward disability. It’s aimed towards the non-disabled reader, but I honestly found it quite helpful in unearthing my own internalized and self-directed ableism as well.

Where on the chart do you see yourself? What has led you to where you are now in your understanding of disability, in either yourself or in others?

Has internalized ableism been a part of your life? If so, what does it look like for you? How do you move past ableism and learn to walk with joy in the fullness of who you are as a disabled person, beautifully and wonderfully made by a good and loving God?

Posted in family life, information

flamingo chicks!

With both boys in Zoo Camp for the week, Aubade and I spent the morning visiting the zoo at her pace. Despite the heat, we had a really nice time together – and ran into an unexpected adventure along the way!

Apparently, at the beginning of the summer, the Phoenix Zoo received 11 greater flamingo eggs from the San Diego Zoo to supplement their flock – and decided to try to train them to go on walks and mingle with people, since they were going to have to hand rear them anyway. So, as we snacked by the Children’s Trail, a zookeeper came up to us and told us that flamingo chicks would be coming out for a walk in just a few minutes up by the vulture exhibit. Needless to say, we cut our snack short and made our way over.

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The chicks are about 7 weeks old and just starting to grow their contoured wing feathers; everywhere else they are still fuzzy with down, and they haven’t begun eating the diet that will provide them with their characteristic pigmentation. They are also still a bit wobbly when they walk, and it was so adorable when they would have to hop on two feet and flap their wings to keep their balance. Having been raised as a group instead of as single chicks (greater flamingos only lay one egg at a time, and the chicks do not socialize with the rest of the flock until closer to maturity), they have become inseparable. They also still retain some of the snuggliness of babyhood, and a few climbed up into the zookeepers’ laps to cuddle after their walk.

IMG_5911While they asked us to stay about 6 feet behind the flamingos during the walk itself (or stay motionless off to the side), as the flamingos can be distracted easily, we got to be very close to them during the huddle at the end. Aubade even got to spray some water on their feet to help them cool down!

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If you’re local and want to see the flamingos yourself, they are currently walking around the Children’s Trail every day at 7:30, and most days at 9:30 (depending on how hot it is). Their walk starts near the vulture and owl exhibits, although I’m sure the exact tour varies from day to day. It’s definitely not something that happens all the time, and worth braving the heat for in my opinion. Just walk out for the poop while you’re following them around!

Posted in autism acceptance month, information, quotes

the autistic operating system

This post is part of my april autism series for autism acceptance month. Visit the first post here for links to the rest of the series!

I still remember the first time I heard of autism, although I don’t remember exactly how old I was (I think I was younger than 10). My dad was talking about one of his coworkers who had twins, telling my mom that while one of the children was developing normally, the other didn’t speak and liked to watch objects spin instead of playing with them in a typical way. My major impression was that autism was a sad and life-ruining thing (probably because my dad said it was sad), but I didn’t really understand what was so wrong about this little boy’s way of being and developing. In hindsight, I think this was the first time I realized that there was a “normal” way to be and that there could be something wrong about being different.

In the years since then, I’ve learned a lot more about what autism actually is: not a spectre of damaged children unable to connect and interact as humans, but a different neurological operating system that manifests in a fairly consistent range of behavioral patterns. Interestingly, these behaviors do not include either intellectual or language impairments, although both of these can present along with autism in an individual. Instead, autistic differences center around areas of social communication, sensory processing, and cognitive focus (including executive functioning). Autistic development is not necessarily disordered – it just proceeds on a different timeline than normal. Autistic ways of thinking, of processing sensory information, of handling emotions in the self and others, are not broken – just different.

The medical definition of autism can of course be found in the DSM-V, and I believe it is good to read and understand that definition even if it does portray autism in a pathologized way, but my personal favorite description comes from Nick Walker at Neurocosmopolitanism (go read the full article!):

The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable. (emphasis added)

Walker puts so much useful information into this paragraph. While lists of common autistic behaviors can be helpful, especially when deciding whether an ASD diagnosis might describe yourself or someone you know, they can often seem disjointed and random without an understanding of their underlying cause (and, I think, can contribute to the common uninformed statement that “everyone is a little bit autistic).

But knowing this central difference between the neurotypical and autistic brain can provide a clearer delineation between the two, regardless of potentially overlapping behaviors, and can also explain many of the strengths and challenges associated with autism. For example, autistic individuals can often have excellent long-term memory and fact recall, as well as higher innate abilities to analyze data and detect patterns – all of which makes sense if the autistic brain is picking up on more information (with more internal emphasis), on a cognitive level, than the neurotypical brain. On the other hand, picking up more information with a stronger impact on the sensory level can make coping with everyday life extremely difficult, when “normal” touch and sound and smell can be acutely uncomfortable or overwhelming.

I’ll be going through more of those differences, both positive and negative, later this week, but for now the important point is that all autistic traits and behaviors stem from a fundamental neurological difference, and that autism, this difference in a person’s innate operating system – in the way they perceive, process, and respond to the world around them – does not make an autistic individual any less in terms of personhood, human dignity, ethical consideration, or worth.

Posted in autism acceptance month, information, links

autism acceptance month

Each April is Autism Acceptance Month.

Not, as some groups would put it, Autism Awareness Month. It’s a different perspective, because it’s coming from a different place. The autism awareness campaigns – like the Light It Up Blue campaign from the notorious organization Autism Speaks – tend to originate from medical professionals and non-autistic parents, people who see autism primarily as a disorder that merits pity and needs to be cured. The autism acceptance campaign, on the other hand, originates with autistic self-advocates (specifically the Autistic Self-Advocacy Network): people who understand autism to be a difference rather than a disorder – a difference that gives to us even as it makes certain things more challenging, and a difference that shapes our identities. To those who advocate for acceptance, considering autism to be a disorder and trying to eliminate it feels like a personal offense.

We are here, say the autistic self-advocates, we are autistic, and we have the same rights and humanity as everyone else. Stop trying to make the way we think and feel and act mirror yours; our autistic personhood is just as valid as your neurotypical personhood.

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autism acceptance word cloud from the autism acceptance month website

This year, for the month of April, I have two major goals. First, I am going to spend the month writing about autism from the perspective of neurodiversity and acceptance, both as a (probable/self-diagnosed) autistic adult and as the parent of an autistic child. Second, I am going to pursue an official medical diagnosis for myself (although all the evaluations are in April, I won’t have the final word until May, unfortunately). I hope that you will join me on this journey – that together we can learn more about neurodivergence and how it affects individuals and society, and find ways to accept and love the differences in ourselves and those around us.

I highly, highly recommend that anyone wanting to learn more about autism focus on information from autistic people. Otherwise, it’s as if you’re trying to learn about the African-American cultural experience from a bunch of white authors, or trying to figure out what it feels like to be queer from the observations of the straight/cis community. Non-autistic professionals can give you an understanding of the history of the diagnosis, or the medical definition of the diagnosis, but they cannot tell you what it is like to live as an autistic person. They simply don’t have that inside understanding.

To get you started, here are some of my favorite #actuallyautistic internet presences (some of them are more than just blogs!), in no particular order:

  • Autistic Not Weird, by Chris Bonnello
    • I’ve been following ANW for a long time now, since back when it was simply a blog. Chris Bonnello has a great sense of humor, a lot of stories to share, and an accessible way of explaining technical information. This was one of the first blogs I read that was written by an autistic adult, and finding that I could identify with almost everything he wrote pushed me forward in my own path of self-discovery. The ANW community on Facebook is one of the most inclusive I’ve run across, with autistic individuals and their families asking and answering practical questions honestly and kindly.
  • Suburban Autistics, by Ally Grace
    • I found this blog by searching for gentle parenting tips, actually! Ally Grace and several of her children are autistic, and she writes about parenting in a gentle, accepting, positive way. I am always both inspired and challenged to be a kinder, more compassionate person and parent when I read her work – and to give myself a touch more grace in my own struggles as well. If you are on Facebook, I believe she is a bit more active there than on the blog.
  • Neurocosmopolitanism, by Nick Walker
    • I don’t think this blog is active anymore, but it is foundational in my understanding of neurodivergence. I would quote liberally from his articles except that once I start, it’s hard to stop! So just go and read them in full. Start with Throw Away the Master’s Tools if you really want to understand the mindset behind acceptance as opposed to awareness.
  • The Girl with the Curly Hair, by Alis Rowe
    • This is significantly more than a blog; it is a compendium of resources, especially for autistic women. Honestly, my main interaction with this site has been mediated through Pinterest, where I’ve found so many quotes –  accompanied by the curly-haired girl illustration herself that – resonate with me on a deep level. (In the following quote, keep in mind that in the US the diagnosis of Asperger’s Syndrome has been deprecated and replaced by an autism diagnosis.)

alisrowequote
Quote: ‘Women with Asperger’s Syndrome may be both brilliantly strange and strangely brilliant! We are genuine, truthful, thoughtful and interesting… with unusual problem-solving skills and out of the box thinking styles. We tend to have volatile emotions, quirks, interesting mannerisms and we tend to feel most comfortable and relaxed when we are on our own.’

So for World Autism Awareness Day today, let’s start looking at autism from the perspective of difference rather than disorder, and seek to understand it from the inside out! My challenge for you is to pick one of the websites I shared above and read at least one article from it 🙂 I’d love to hear what you read and anything from it that stood out to you!


all posts in the april autism series will link here after they’re published!

Posted in information, musings

quack quack: my autistic duck analogy

Whenever my husband and I talk with people about autism, or describe some of the behaviors and traits that are related to it, someone will inevitably identify with one or more of those behaviors and joke about how they must be on the spectrum too. As another logical conclusion would be that autism is an exaggerated or imagined condition, I am glad that no one I know has used their identification with an autistic trait as an opportunity to disbelieve the existence of autism! However, the situation is common enough that I’ve been searching for a good way to illustrate the difference between having one or more common autistic behaviors and actually being autistic.

An infographic from Little Black Duck (an Australian company specializing in autism communication services) uses the analogy of pregnancy: someone might have some of the symptoms that are commonly associated with pregnancy, like sore feet or nausea or weight gain, without actually being pregnant – there is a different underlying cause behind the similar or even identical presentations.

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I think this is a helpful analogy for the most part, except for the fact that autism as a condition is defined by the presence and degree of certain types of behaviors. Pregnancy is very clearly distinguished from non-pregnancy by the presence of a fetus; there is no such clear-cut biological test to distinguish the autistic mind from the allistic mind. Those very human behaviors that present in both autistic and allistic individuals are the only metric used in making the diagnosis, and the line is drawn at a somewhat subjective conjunction of multiple co-occuring traits and the severity thereof.

To me, the clinical struggle of defining the autism spectrum seems similar to the zoological struggle of defining a taxonomical species. Perhaps a duck could be defined as a warm-blooded, egg-laying animal with wings, feathers, webbed feet, and a broad bill. A seagull could relate to many of these duck traits, but not having all of them would fall short of the official criteria. A bat or a snake or a duck-billed platypus could relate on a more distant level, while a moose or bear would struggle to understand the duck at all save from an external perspective.

Likewise, some people will relate to the social anxiety many autistic people struggle with; some people will identify with sensory sensitivities; others will connect with the difficulties of small talk and nonverbal communication. People with other neurodifferences, like ADHD or FAS, will probably have more behaviors in common with autistic people than the general allistic population will, but like the seagull will fall short of the official criteria for the diagnosis. On the flip side, some people will lack almost all of the autistic traits and behaviors, and struggle more to bridge the differences between them and their autistic family and colleagues. But just like ducks are still animals, and all of their characteristic traits are shared (individually or in sets) by some species or another in the animal kingdom, so too autistic people are still human, and all of their characteristic traits can be found scattered throughout the general human population. It is only when all those traits converge that a duck is defined, or autism is diagnosed.

Now I just have to wait for a conversational opportunity to use my new analogy 🙂 What do you all think? Does it make sense? How do you try to explain the difference between autism as a neurotype and commonly seen autistic behaviors?

Posted in book lists, family life, information, wwlw

what we’re learning wednesday: episode 6

Due to his love of rain and his constant desire to know exactly when things are going to happen, Rondel has begun to ask me questions about the weather constantly. And because I never properly learned about the weather to begin with, there wasn’t much I could tell him.

So we did what we always do when faced with a topic of ignorance and armed with a thirst for knowledge: we went to the library and came home with books!

There are surprisingly few books about clouds, and no books that I could find at our library specifically about Arizona or desert weather, at least not at my kids’ comprehension level. But these three are not bad, and we’ve learned a lot from them.

Look at the Weather, by Britta Teckentrup, is a beautiful, artistic book, filled with gorgeous atmospheric drawings, leading questions and statements about the personal impact of weather, and interesting scientific facts about weather. Each page tends to have only a few sentences, so although the book is very thick it doesn’t take nearly as long to read as one might expect. It will walk you through the build-up to a storm, for instance, painting the gradual accumulation of clouds slowly, until you almost feel the tension of it around it. But it will also give you tidbits of very fascinating information – I never knew how hail was formed until Teckentrup explained it here, for example!

The Man Who Named The Clouds, by Julie Hannah and Joan Holub, is really more of a biography of Luke Howard, the man who invented the precursor to our current scientific classification system for clouds, than a book actually about clouds – but there is a serious amount of scientific information included. I particularly appreciated the diagram towards the end of the book illustrating the current cloud classification system, and we’ve been attempting to classify the clouds we see when we are out and about each day (we saw mostly cirrus clouds today; Rondel is holding out hope for some cumulonimbus clouds since they are the type of rain clouds we typically get with the monsoons!). Overall this book was a bit above the boys’ heads, and not completely aligned with their area of interest, but by skimming and omitting while I was reading it aloud we managed to get a lot out of it anyways. On a second read through I will probably include more, depending on how it seems to be holding their attention.

Clouds, by Anne Rockwellis probably the book best-suited for answering Rondel’s questions about clouds at his level. But I haven’t read it with him yet! We’ve been distracted with the other books, and he’s caught the virus the rest of us have been passing around so we’ve been a bit preoccupied with that. This book also has instructions at the end for creating a small cloud in a jar, and I’m looking forward to doing that with the boys. From reading the book on my own, this should reinforce the information we gleaned from The Man Who Named The Clouds, and be a short, easy way to soak up more weather-related knowledge. The Let’s-Read-And-Find-Out series, of which this is a part, has been in my experience a good source of basic knowledge on any science topic we happen to have questions about.

While we continue enjoy these books, I’m going to continue searching for books about our local weather; we live in a fairly unique ecosystem, and I’d love to learn more about the weather patterns and seasonal changes specific to the Sonoran Desert. Please let me know if you have a good resource on this!

(And if you were curious about how hail is formed, here is what Britta Teckentrup has to say:

“Hail is caused when the wind sweeps raindrops up into higher, cooler parts of a cloud before they get a chance to fall. They freeze in the cold air. When the ice droplets begin to fall, sometimes the wind catches them and sweeps them to the top of the cloud again. They can cycle up and down inside the cloud several times, adding layers of water and ice as they go.

“Eventually, the ice balls become too heavy for the wind to carry upward, and they fall as hail.”

So the stronger the wind, the bigger the hail can get! Now I understand why we typically only see hail in our craziest, most intense storms – only they have strong enough winds to lead to the formation of hail.)

Posted in family life, hikes, information

hiking with littles: ellison creek

Before my husband and I were married, we hiked a lot, for most of our dates actually. It was one of our favorite ways to spend time together – we both love the outdoors, I liked having a way to be with someone I loved without the stress of normal small talk (since the activity determined the body language and visual focus), and it’s really just a lot nicer to do anything when you’re using your body and surrounded by beauty. (We even rented a remote cabin and just hiked around for a week for our honeymoon).

So, ever since we started having babies I’ve been waiting for them to be old enough to hike with us! And honestly, I’ve been waiting even more for them to be old enough to hike with just me – for them all to be able to hike well enough that I only have to carry one of them at any given time, and can even have some time without carrying any of them.

Now, at last, we’re finally there.

After giving them a taste of wildlife and the natural environment at Saguaro Lake, and realizing that they loved it, I began searching for easy or short hikes up in Payson that we could explore together while the weather is still too hot in the valley. Payson is less than two hours from our house, but the environment is very different: mountains, pine forests, narrow creek beds and rocky waterfalls, berry brambles and grapevines, etc. When it’s over 100F here, it’s in the 80s up there, with the shade from the trees, the breeze down the canyons, and the cool water to make it even nicer.

The first real hike I attempted was at Ellison Creek, at the Water Wheel crossing just north of Payson. The day use area is easy to find, with a fee of $9 (check the National Forest Service for up-to-date information, especially with regards to closures during fire season before the monsoons) and a vault toilet that it ridiculously clean.

When we arrived, I had trouble locating the trailhead, so we played in the creek for a while first, swimming in a little pool and climbing the rocks in the area (all three kids love climbing).

When we came up from the creek to have a snack, I found the trailhead. It is actually well-marked, with flash-flood warning signs and a memorial to people who have died in this creek from flash floods. This is not the most comforting way to begin a hike in monsoon season with a forecast of rain in the early afternoon, and because of the history of the location I would recommend hiking this creek at a different time of year or on a day without expected rain; if that isn’t possible, just be very aware of the weather at the moment and turn around to leave the creek area if you feel a cold breeze and see the thick clouds of a storm head rising over the mountains.

The trail begins relatively flat and smooth, and even Aubade was able to walk along here for a long time. We took some time to “stop and smell the roses” – Rondel was especially fascinated by the small insects living inside the huge white flowers of the sacred datura, and examined every blossom carefully. Just so you know, these plants are toxic and hallucinogenic, so make sure no one ingests them if you are hiking with small children. They are certainly stunning, however!

After a short while, the trail became harder to follow as it went through more rocky areas – over boulders and up ledges. I mostly decided upon our direction by guessing which path over the rocks would be easiest for small legs, and was rewarded whenever we happened upon a sandy area with footprints letting us know we were still on the trail.

We eventually stopped at a high point of the creek, where a rippling waterfall cascaded over the stones across from us and a little pool collected in a cup of the rock where we could play. The trail continues from here up to a larger waterfall that I believe has a staircase and a large swimming hole underneath, but at this point I saw rain clouds coming in and needed to turn around and get out of the ravine quickly.

Up there on the high rocks, surrounded by pine forest, with only the sound of wind, water, and birds, is fairly close to perfection in my opinion, and the kids thought so too: only showing them the rain clouds and explaining the potential risk to them convinced them to leave.

Obviously we made it out safely; the rain hit us at the parking lot while we were eating lunch, and we got to enjoy it for a few minutes before heading out for naps. All in all? A perfect introductory hike for my three adventurers, and an incredibly refreshing day for me out of the city and away from the noise and people and pressure of everyday life.

To reach the Water Wheel day area from the East Valley: Take the 87 through Payson; turn right on Houston Mesa road and continue for 7.5 miles. Water Wheel Crossing parking area will be on your right.