Posted in musings

internalized ableism

Sometimes the things we hate the most are things inside ourselves.

If you’ve read the Harry Potter series, you may remember the story of Dumbledore’s younger sister Ariana, who was unable to acknowledge or accept her own magical abilities after a traumatizing encounter at a young age. Because of her experience, she began to see her magic as something freaky, abnormal, disgusting, or fearsome – so she tried to conceal it, control it, eradicate it. But it was a part of who she was, and for all her attempts it would still come bursting out, wild and uncontrolled, in moments of high stress or emotion. And through trying to bury her magic, she was never able to reach the heights of power and beauty that she would otherwise have been capable of: her own self-hatred, shaped by the fear and disgust of others, held her back.

The movie Frozen tells a similar story. Elsa tries for years to lock in her power, controlling it only in the sense of never using it and never letting anyone know it exists – but she has to isolate herself to do so, locking herself away just as she tries to lock her power away, and when circumstances intensify, her power is revealed in erratic, wild, dangerous ways. And because of all those years of the people she loved and trusted most telling her not to use her power, to hide it, to control it, she is (at first, anyway) unable to see the beauty and potential of it. She is swamped by feelings of her own inadequacy and monstrosity, believing the lies of the disgusted and fearful crowds.

This is what internalized ableism looks like.

This is how it feels to believe that a part of you is broken or inadequate or shameful, that something about yourself should be hidden and controlled and never talked about, that something central to the core of your being is something normal people are right to be afraid of or disgusted by. This is what it looks like to shut down your abilities because they are different than other people’s abilities and they make you stand out in an uncomfortable way – to deny the fullness of who you are in a futile attempt to just blend in and meet the expectations of normalcy. It can lead to anxiety or depression: to a fear of rejection, perhaps, a fear of being revealed as some sort of unlovable freak or incompetent imposter. It can lead to resentment of or contempt for those who are open about their differences – maybe there is a bit of jealousy there: that someone else is able to live without shame into the fullness of the abilities God gave them, without the constant self-hatred and fear; or that someone else gets to inconvenience everyone with their needs while you have to suck it up and pretend your needs don’t exist because you don’t want to be the abnormal monstrous burden that your ableism tells you that you are.

It gets a bit emotionally convoluted, in case you couldn’t tell 🙂

And the worst part is that it is so hard to see it in yourself, and so hard to change it once you do. Shifting your paradigm about the world and your place in it feels like repeating a lie, over and and over again, in an attempt to make it true. Different is not less, over and over again. My needs do not detract from the value of my personhood, over and over again. Having areas of weakness does not mean I am incompetent and lazy, over and over again. Asking for help does not mean I am a failure, over and over again. My success, and my path to it, might not look normal, and that is ok – over and over again. Maybe if the new thoughts get repeated enough they can beat down the ascendancy of the old negative ones.

Ariana never had the chance; she died before she was able to heal, if she ever would have been able to anyway. But Elsa – by the end of her story she is beginning to learn, beginning to accept herself with her differences, not despite them. She is beginning to see the extra beauty the world can hold because of the differences of the people in it, no matter how abnormal or debilitating their abilities may seem at first. She is beginning to focus on what she can do instead of trying – and failing – to act just like everyone else, and in so doing is able to fill a unique place in her community instead of staying isolated and hurting.

We all have something to give, and we all have strengths and abilities we can develop, and we hurt ourselves most of all when we believe the lies that say our differences make us less or that we should be ashamed of our weaknesses and needs. Society has enough contempt for the disabled and the neurodivergent; why should we add to it with our own self-hatred?

 

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.

everyonesautistic-500x708

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 musings

turning thirty

I suppose turning 30 is as good a time as any for contemplating my twenties and looking ahead to my thirties, since we use a base ten system. Ten years is such a long time, when I sit down and think about it – I mean, ten years ago I was single and in college, and ten years from now I will have two teenagers…

It is interesting how time passes, how so many things change about life and circumstances, and how yet, inside, I still feel like the same person I always have been. I suppose I have grown and matured since childhood; but I still feel like the preteen who couldn’t put feelings into spoken words even when she was bursting with them, like the teenager who was haunted by feelings of inadequacy and failure, like the college student who knew how to excel academically but could never maintain social connections, like the young adult who tried to bury her insecurities by attempting to be perfect at absolutely everything. I suppose that is part of being a complete person: carrying a self that at its core remains one thing, one entity, despite the processes of maturation and the effect of time.

And what have time and maturation done for me, these last ten years?

Superficially, I graduated college; got my first non-student job (which I’m still at 8.5 years later!); lived with roommates for a year; recovered from a break-up; lost a treasured mentor; dated and got married to my husband; bought two homes (we moved); and had three kids.

Not so superficially, I struggled a lot over the last ten years with my inner companions of depression and anxiety. The first year of our marriage was especially hard because it felt too good to be true, I suppose, but in the long run our marriage has ended up being one of the most helpful things for that struggle since I have a partner I can trust to unconditionally love and support me through hard times. Also in this decade I sought out professional help for the first time and found it incredibly helpful. I’m realizing that depression and anxiety are fairly loyal and steadfast traveling companions, so I know I’m in for a more struggles still to come, but I’m also realizing that having them around doesn’t make me any less valuable or worthwhile as a person.

Along with mental health and marriage, parenting and neurodivergence have been the two big players in my life over the last decade, particularly the last five years. I have been learning that difference is not necessarily negative, in either myself or in others, that perfection is not the goal (and is ultimately a subjective goal anyway). I have been (and probably always will be) learning to be patient 😛 I am learning how to draw boundaries for myself – even with my children – and how to teach my children to draw boundaries for themselves. I am learning that a bad day or a difficult season does not make me a failure as a parent. And I am learning not to compare myself or my family to other parents and families, because the differences of personality, neurotype, and circumstance are so vast and varied.

Most days, honestly, I feel like an imposter at this whole adult-ing thing. Inside I’m just a teenager, nervous and insecure, with the added pressure of having more years of mistakes to look back on 😛 According to my husband this is fairly common, though, which is somewhat consoling 🙂 My hope is just that, however many years are still to come, I will keep growing in wisdom and holiness, and that I can be a blessing to the people around me instead of running away from them.

Posted in musings

stimming for joy

I stimmed today, for the pure joy of it.

I shook my hands back and forth like there was a vibrato in my wrists; I made waves through the air like the swirling lines of a dancing ribbon; I watched my fingers sparkle against the sky.

We were at the park; a storm was rolling in and the air was cool and crisp, with a bite to the wind. I was pushing Aubade and Limerick on the swings, feeling like I could fly with them, happy in the weather and the hours we’d been at the park already and the laughter bubbling from them as they swung. I would run towards them as they flew backwards, then dart backwards out of the way just before they could swing forwards and crash into me, and they would laugh so hard they could hardly catch a breath. Aubade would crow, “Three!” and I would push her three times, each one bigger than the last, so the third push would make her erupt with glee. And as the happiness ran through me it ran to my hands, and I chose to let it be instead of shutting it down, and I found as my hands danced in response to my happiness they also made it grow, until I was as completely blissful as I have ever been as far back as I can remember.

Normally, I have my body on some sort of lockdown – I can feel an impulse to move and then before I even have time to process it there is a counter signal to hold still. Normally, the only things that get through this lockdown are the stims that I need to cope with my anxiety or the stims that occur when I’m thinking hard enough about something else that I don’t notice what my body is doing. In other words, I let my body process and express my negative or neutral emotional states (at least to some extent, because I have learned that it is important for my mental health), but I prevent it from feeling my joy.

I’m starting to think, now, that the stimming of my happiness may also be important for my mental health. I have walked the thought paths of depression for so many years, always feeling inadequate, always feeling like I was carrying a nameless secret that would make people reject me if they found out, always shutting down my happiness from reaching my body so that even the moments of the most joy and beauty were tinged with sorrow. But here my body is ready and waiting to give to me the gift of happiness – of taking my happiness and escalating it, elevating it, prolonging it – able to protect me from the darkness of those roads, if only I am willing to let it do so.

I stimmed today, for the pure joy of it. I hope I can feel free and confident enough to do it again.

Posted in sqt

{sqt} – why I write about neurodivergence

For this week’s quick takes linkup Kelly wrote about why she and a few other bloggers write about their families and how disability affects them, with some solid insight about the good to be gained from writing and the pitfalls to avoid. I do recommend reading it, especially if you write or are considering writing about your own family! (Key takeaways? Show how the happiness of everyday life is not less because of disability, and don’t overshare about your children’s private issues.) From my perspective, here are several of the reasons that I write as much as I do about my own neurodivergence and Rondel’s autism on this blog (in no particular order).

  1. Writing helps me process life. Since I learned how to write I have consistently found it far easier to coherently express my thoughts in a written format than vocally. My mom and I actually had a journal for writing back and forth to each other when I was around 10 or 11 that we used and that I appreciated a lot! Similarly, my husband and I used Facebook Messenger for most of our serious pre-marital conversations, because the anxiety involved was so much less and the processing time could be longer. Now, I use the blog to help me focus on things I want to remember, organize events as they happen (since I can never remember anything chronological reliably), and fully formulate my thoughts on issues that are important to me.
  2. My son is a human person of innate worth due all the respect that any other person should receive. (Well of course, you should say). But from a lot of the autism rhetoric on the internet, a person could easily come to the conclusion that this is a radical or even untrue statement – and for that reason alone I believe it is essential to write about him and our family in a way that demonstrates his humanity. Some of his actions may not look like what society expects; his developmental timeline may be different than “normal”; and he may struggle with things that most people consider to be trivial inconveniences or perhaps don’t even notice. But those developmental differences do not make him less worthy or less human.
  3. Autistic children grow up to be autistic adults, and they still struggle with things that most people don’t struggle with. So that’s why I write about myself: first so that people can understand why I or other neurodivergent adults may act in certain ways, second so that neurotypical adults don’t trivialize our struggles because they only perceive the slight quirks and oddities that show through our masking, and finally so that younger neurodivergent individuals can see adults like them living and struggling and coping and thriving in the world. We might not be the best at forming in-person communities (and it would be hard anywhere except in a large city anyways), but even just knowing other people like me through the Internet has been hugely encouraging and enlightening; I’d love to be able to extend that gift to someone else.
  4. As a corollary to this, it has been especially difficult for me to find a community of Christian autistic/neurodivergent adults, particularly women. There is one in my small group which is amazing – I don’t recall having had that kind of connection in an adult friendship before – but other than that there are just a couple blogs that’s I’ve found. I would love to both share how I live my faith as a neurodivergent individual and help the church deepen its understanding of neurodivergent individuals, and maybe I can start small here.
  5. Sometimes I find things that I want to share, and the blog is an easier way for me to share them than on Facebook, where it is so easy to hurt feelings. See this link for an example: Ink and Daggers: Small Talk (trigger warnings for ableism, child abuse, and language).
  6. I can’t think fast enough in conversation to discuss things that are close to my heart. I struggle to read my companion’s reactions, to gauge where next to move the discussion, to know how to change the subject without giving them my agreement, to be passionate without getting emotional and losing the words I need most. I wish I could tell everyone about neurodivergence, to promote acceptance instead of toxic awareness, to advocate for myself and Rondel and other people who are hurt daily by the ableist assumption that they are less because they are not normal, to help people to understand instead of pathologize autistic behavior. But I just cannot manage all the little things required by conversation while a high-stakes, emotionally-charged issue is the topic; it never ends well. Instead I write, and maybe my words will reach eyes that need to read them instead of ears that need to hear them.
  7. Finally, this story is all-too-common among people whose differences were seen purely as deficits, whose superficial abnormalities were trained out of them but who were never given coping skills for their deeper struggles, who were only ever valued for appearing normal and never praised for their unique abilities. This is not my story, because I was blessed with parents who always sought to understand and support, but it is a story I have read time and time again in the online adult autistic community. I write to try to create, with my words, a world in which this is not the norm for autistic children. (Is it the norm, you ask? Surely it can’t be that bad? Well, it is the result of therapeutic practices condoned by major groups such as Autism Speaks and the Judge Rotenberg Center, so it is definitely mainstream. I am hoping it is becoming less common, of course.) I write also to share those more painful and disturbing stories – and the principles gleaned from them – so that fewer people can say, “oh, I didn’t know!” as an excuse for their inaction and indifference.