actually autistic – little thoughts

books

Posted on 2020-05-242020-05-20 by kristinabean

Over my lifetime I have read thousands of books (estimating from the years I’ve actually kept track). Books are easier than real life: the author filters out most of the irrelevant information from the narrative, internal perspectives provide verification for the emotions being communicated through a character’s body language or tone, and confusing sections can be reread until things make sense while the rest of the book waits. So sometimes it can be a nice escape from the complexities of life to dive into the world of a book – but on the other hand, spending so much time analyzing social interactions in written form helps me to understand them better when I encounter them in the wild, so to speak. There have been countless times when I’ve noticed something happening and thought, “oh! I’ve read about this! What was a helpful response when this happened in the book?” and based my reaction off of what I’ve read.

(The one time someone tried to bully me as a child I thought, “oh, I’ve read about bullies. They are usually sad and insecure people. Poor kid.” I was also highly amused that he though I’d be offended by the name “Four-Eyes” when it was a taunt straight out of the books! How unoriginal!)

Books also help me understand my own emotions. As the characters experience situations and as their emotions are described, I try to put myself in that situation and feel those emotions. This is anxiety: observe the triggers, observe the physical response, observe the words that are used to describe the associated emotional response. This is happiness; this is grief; this is insecurity; this is attraction; this is contentment. I feel things extremely strongly, but I struggle to understand those feelings, and books help me create a reference against which I can evaluate and by which I can name my own emotions as well as the emotions I see in others. And it does this in a safe way, allowing me to proceed at whatever pace I need to, not overwhelming me with sensory input about an unfamiliar or upsetting emotion.

(This is probably why I enjoy books with a lot of emotional content even though I am very uncomfortable with emotional expression in movies or in person. I can take a break if I need to, I can process the emotions slowly and through multiple filters, and I don’t have the intense sensory input of a strongly emoting person to deal with while I’m figuring out what’s going on and why. And I do think it gives me a foundation to work from when I encounter those emotions in the real world, whether in myself or in others.)

So I’m thankful for the gift that books are to me – that on top of the enjoyment of a good story, I have their help in deciphering the puzzle of emotion and social communication, in decoding the physical clues that reveal someone’s feelings, in learning the rules and patterns of social behavior. And that when I need them, they are always there to be my friends.

Uncategorized

autism comic

Posted on 2020-03-022020-03-02 by kristinabean

I came across this comic the other day and completely related to it! As in, this is me not just every night when the kids are asleep and I have self-directed time, but every time that the whirlwind of planned activity, schedules, and input from other people (mostly the kids demanding things 😉 ) stops long enough that I have to decide what to do next.

The character Stimmy Kitty is lying on a couch. First panel: she thinks, “I need to get up.” Second panel: she thinks, “But do I do my homework or my chores? What chore do I need to do first? Do I clean my room so I can do my homework?” Third panel: her thought cloud surrounds her (evoking her mental overwhelm) as she thinks, “No… Or should I draw instead? Maybe a better idea would… But what about feed… What I really want to do is go on a walk, but first I… What is wrong with me? I still need to do chores but How do I even get up? Which foot first? I can’t move.” Fourth panel: a voice off-screen says, “You need to get up.” Stimmy Kitty replies, “I can’t.”

The artist behind this strip, Steve Asbell, has a whole series featuring Stimmy Kitty here. The comic illustrating the build-up to a meltdown/shutdown was also one I particularly identified with, but really they are all quite good and you should check them out if you’re not already familiar with them!

Autistic Behaviours are Human Behaviours

Autistic “challenging” behaviours are not “caused by autism”. They are a very human response to extreme stress. All humans in that kind of stress will exhibit these exact behaviours. Our behaviours mirror our emotions. If we are exhibiting “challenging” behaviours it’s because we are finding something in our lives very challenging. Same as anyone else.

– Autisticzebra, Autistic Behaviours Are Human Behaviours

Please go read the rest of this very excellent post by Autisticzebra. Autism often makes things more challenging – situations that seem normal or positive to a neurotypical may be extremely difficult for us. But the behaviors that don’t make sense to the neurotypical onlooker – the challenging, self-harming, out-of-control behaviors – they may seem a lot more rational if you understand where they are coming from. And this post helps put those behaviors into that much-needed context.

musings, quotes

treating autism

Posted on 2020-01-052020-01-02 by kristinabean

“The absence of effective treatments for manic-depressive illness in earlier times did not mean that these patients were not treated. They were treated with all sorts of substances and procedures from ancient times onward. It’s just that none of these treatments worked, and most were harmful.” – Walter A. Brown, Lithium (emphasis added)

When I came across this quote I thought instantly of modern treatments for autism – not the few designed to help an autistic individual learn to cope with the neurotypical world, but those that claim to cure the condition. Even the most mainstream behavioral therapy is concerning (particularly to autistic adults who endured it as a child), and desperate parents who can’t handle having an autistic child try many stranger and more dangerous “treatments.” Different restrictive or elimination diets are supposed to reduce the behavioral symptoms of autism, according to parental observations; given the oral and textural sensitivities of many autistic people, those diets are likely to become even more restricted to the point of being unbalanced, or very costly for the parents (and objective, blinded research observations show no difference). Parents may choose not to vaccinate to prevent autism, and instead create opportunities for potentially deadly preventable diseases to flourish. And one has only to read about the “bleach cure” to see how supposed cures can cross the line from unwise to abusive.

Autism may not even be curable. It’s highly unlikely a single compound will be found that renders the autistic mind essentially neurotypical, like lithium can regulate and even prevent the mood swings of bipolar disorder. And yet so many people invest so much time, energy, and money into making autistic people act like and think like neurotypical people – even when those efforts are harmful to the autistic people they claim they want to help. It’s like forcing deaf children to speak orally and lip read instead of encouraging sign language, or shaming a wheelchair user for not trying harder to stand and walk. Instead of hurting autistic children to try to mold them into conformity with some neurotypical standard they can never completely reach, support them by making the world more aware and accepting of neurodiversity. Help them develop social skills, adaptive and pragmatic skills, and language skills without trying to change the core of who they are, and learn to see each child for the unique and beautiful person that they are, needs and struggles and gifts all bundled up together.

family life, musings, quotes, sqt

{sqt} – some awesome saints, and other thankful things

Posted on 2019-10-03 by kristinabean

I’m linking up with Kelly at This Ain’t the Lyceum today – head over and read the other quick takes!

Right now, I’m so thankful for the communion of saints and for the wisdom of the church in setting up set days to remember them! I’m thankful for St. Therese of Lisieux, whose feast day was earlier this week, and her reminder to me that all that matters is to love God – and that I can love Him completely and faithfully in each small, tedious, mundane act of service and duty that I do. I’m thankful for her example of perseverance and submission, accepting the waves of life as God brought them and honoring the human authorities over her.
I’m also thankful for St. Francis, who we celebrate today, and his radical yet simple life of faith. How could I not want to learn from and follow in the footsteps of a man who saw and respected the beauty and dignity of all nature without succumbing to the nature-worship of the ancients or the romantic poets, who received visions from God but interpreted them so literally that he may have been autistic and certainly appeared foolish, who embraced that foolishness and transformed it into complete humility, who designed his own way of life and faith yet never broke fellowship with the institution of the Church, who lived in utter poverty and served the least and the forgotten? When a person’s prayers are preserved 700 years after their life and still ring with deep resonance and passion, that is a person I want to emulate and honor, whose prayers I wish to echo.

“I pray, O Lord, that the fiery and sweet strength of Your love may absorb my soul from all things that are under heaven, that I may die for love of Your love as You deigned to die for love of my love.
St. Francis, prayer to obtain divine love

I’m thankful also for the warrior saints – for the angel Michael, who we celebrated on Michaelmas, and for his legendary archetype St. George fighting the dragon. Life can seem so big and demanding and overwhelming to a child, like the dragon loomed large over St. George, but in the saint we find inspiration to fight our dragons, to get up and try again even when we are knocked wounded to the ground, until they are finally slain. Like Michael fighting demons to bring the message of God to Daniel, using his strength and courage and valor to persevere in obedience, so we can summon up those traits (by the grace of God, and by practice and growth) to fight back the temptations to fear, laziness, anger, and any other vice that besets us. We read an illustrated rewriting of Spencer’s version of St. George and the Dragon this year, and it has given both the boys and myself extra motivation to endure in doing good even when it is hard. We know there are dragons; it is good to be reminded that they can be killed.

I’ve been thankful for the weather recently as well! The heat broke and several days of rain blew inland from a hurricane, just a couple weeks after I seeded for the fall garden season, so all the little plants are doing beautifully and the sweet potatoes (which had to be started in the summer) are absolutely thriving – I’m trellising them so the vines don’t take over the garden beds and the vines are at least six feet up the trellis already.
The kids were also so excited about the rain, as it’s such a rare occurrence here and the monsoons were weak this summer. We went on walks all around the neighborhood to enjoy it, Aubade splashing in every puddle, Rondel searching for treasure along the way, and Limerick challenging my strangeness by biking around barefoot in pajama pants and a winter jacket…

There have also been some hard days recently – my moods and autistic sensitivities both oscillate based on a number of factors including my monthly cycle, and irrational guilt plus social anxiety plus hair-trigger sensitivities to certain sounds or touch does not make for a pleasant time. But I am so thankful that Paul understands and supports me through those times. He might not relate to it at all, but he knows it’s a struggle I have and he carries the extra weight of it when I can’t without ever making a big deal about it or drawing attention to himself. He doesn’t get upset when I hide by myself in a curtained side area during church service instead of sitting with him on days when I can’t tolerate the people around me. He makes time for me to rest and then makes sure that it happens when I need it. In short, he is always showing me love.
And finally, I’m thankful for prayer and the Word and a God who draws near to us and longs for us to draw near to Him. I’m thankful for the sacraments: for the physical and tangible things God uses to convey His grace, like the mud and spit He used to give the blind man sight, and the waters of baptism that cleanse more than just our bodies. I’m thankful for His plan of redemption, for the hope that all broken things will be restored and that the glory to come will outweigh the suffering of the present, for the opportunity to say yes to His will and be a part of making all things new.

What are you thankful for this week? I’d love to hear the good things God is working in your life, whether it’s in the weather or a book or a relationship 🙂

autism acceptance month, information, links

autism acceptance month

Posted on 2019-04-022019-04-25 by kristinabean

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.

AAMwordcloud3 — 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!

musings

accepting autism when I want to be normal

Posted on 2018-08-062018-08-06 by kristinabean

I remember the first time I revealed my depression to another person, and the first time I admitted that I had wanted to commit suicide. It’s not an easy thing to be open about; it’s shameful, and dark, and has the potential to hurt the person you’re talking to quite a bit (especially if they knew you when you were going through it and didn’t open up to them until years later). I’ve found a way to accept it as a part of my story and talk about it now, though, and I hope when I talk about it that I can encourage others who experience it. I have a mental illness, I can say, without being ashamed or guilty. I have been in these dark valleys, and heard these poisoned voices, and felt the dank stagnant breath of despair on my face. If you are there, I can say, where hope seems entirely absent and all light is lost, where you are lost in a pathless wilderness and the very thought of finding a way out seems pointless, I have been there too, and I am a witness that it is possible to return to the land of the living.

Autism has been a more difficult name to claim for myself. While I don’t have a medical diagnosis, it’s not doubt about the validity of the label that stops me; I can see every symptom in my autistic son mirrored in myself, I score well above the cutoff for every ASD questionnaire I’ve ever taken, and it’s evident to others to the point that my husband laughed at me when I told him I wasn’t sure if I could be autistic myself.

Instead, I think what makes it difficult for me is the admission, in accepting this diagnosis, that I may struggle with certain things for the rest of my life without a “fix.” That some of the aspects of myself I’ve always hated, some of the traits I’ve never accepted, are part of my neurology that will never go away. I can take a pill to shut out the blackness of my depression; there is no pill that will help me fit in with a group, or know how to move my face the right way when I listening to someone talk, or recognize when a friend is being sarcastic and when they’re being serious. I can go to a therapist to talk through unhelpful thought patterns and try to replace them with healthy and positive ones so that a depressive trigger won’t need to set off a ruminative episode of self-hatred; I can’t go to a therapist to talk away the irritability caused by spending all day with three kids whose normal play and conversation feels like an assault of noise, or the emotional breakdown induced by a last-minute schedule change, or the heights of anxiety scaled every time a new event or social appointment is upcoming. I mean, a therapist could potentially help me find ways to cope with those physical and emotional reactions – but they are still always going to be there.

As we’ve gone through the process of Rondel’s diagnosis and my accompanying self-discovery, I’ve read and read blogs and articles from the #actuallyautistic community – I’ve sought to have my understanding shaped by the words of autistic adults and self-advocates. So I know that autism is just a different wiring, a different way of perceiving the world and being in the world. I know that very often it is social norms and expectations that make autism difficult, not autism itself – that is, the difficulties do not exist because autism is bad, but because it is different in a world not designed to accommodate differences. I love that autism has given me a mind like a database and an unfailing eye for patterns. I think I can give autism some credit for saving me from the girl drama of middle school and high school, for giving me dedicated and focused attention on things of interest and importance to me, for helping me to be an honest and trustworthy person, for developing my (often repetitive) love of books and reading.

But sometimes it is just hard. I don’t want to be a different person, but sometimes I’d love to be part of a conversation without constantly having to evaluate and compare my responses with the responses of the other people involved, without having to laugh at a joke even if I don’t get it at all, without having to guess whether a statement was meant to be funny or sarcastic or not. Sometimes I’d like to be invited when church friends or coworkers have a BBQ or a game night – and sometimes I’d like to receive an invitation with casual nonchalance instead of panicked uncertainty. Sometimes? – I wish I could actually be normal instead of just pretending to try to fit in.

violet_incredibles — “Normal? What does anyone in this family know about normal? […] We act normal, Mom, I want to be normal!” – Violet Parr, *Incredibles*

But maybe it is harder to try to be someone I’m not, and waste my life wishing I were that other, neurotypical, person, than learning to accept and embrace who I am, struggles and all. Maybe it is harder, in the long run, to wear a disguise every day of my life and pretend that I never need help or support. I just know that right now I’m still too scared to take off that mask.