Posted in musings

because it is good to belong somewhere

One of my favorite things about our church is the group of people I’ve gotten to know through the special needs branch of the kids ministry (called Equipped, for future more succinct reference). I’m not one who ever really feels that I belong in any particular group, but it comes close here – at the least, I feel like here are people who desire to understand and support our whole family, and who have a solid foundation and similar experiences on which to build that understanding and support.

To provide a concrete example of what I mean, I skipped our small group’s Christmas get-together (familiar people, familiar place, convenient time of day) because I was worried about the social expectations involved; but I jumped at the chance to go to the Equipped Christmas party (only some familiar people, unfamiliar place, inconvenient time of day) because I knew that whatever behavioral issues came up we would be unconditionally loved and accepted, and because I knew there would be other people there like us potentially dealing with the exact same behaviors and struggles. To be not alone, and for one’s difficulties to be understood and normalized, is an incredible gift.

I think it is for this reason that minorities and people with other differences often find themselves isolated from what could be called the mainstream culture (it may only be mainstream relative to a certain location or culture subset, of course). It is just so much more comfortable for any human being to be around people who are similar to them, with whom they can connect across some significant differentiating and identifying characteristic – and for people who are typically outnumbered or alone in those key characteristics in everyday life, a chance to not be the odd one out is like a breath of fresh air.

It is of course good and important to know how to live in mainstream culture, and it is at least as good and important to understand minority cultures of which one is not a part (I am always thankful for every person who tries to understand autism instead of judging or ignoring it, who isn’t offended by my refusal to participate in Sunday morning “greet your neighbor” moments for instance!), but it is also good to find a place where you can be yourself – and as a parent, to connect with a community where your child can be themselves around other children like them, so they too can have a place and time to no longer feel different and alone. And that is the gift that my church is striving to give to her children with differences and disabilities, all these neurotypical parents seeking to understand and support their children instead of forcing them to hide their true selves and appear “normal”, and it is (even incomplete and imperfect) a beautiful thing.

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.
Posted in musings

making accommodations for myself

Every fall and spring the women’s ministry at our church creates a Bible study and hosts a few events for all the women at the church (in addition to the regularly-meeting discipleship small groups). I’ve never attended any of the events before, or been part of the study groups, just because life has been busy, but I have been feeling the need for more structure in my spiritual life to give me direction and motivation, so I went to the first meeting of the year a few weeks ago (leaving Paul to do bedtime with all three kids 😉 )

Large group events like this can be challenging for me for a number of reasons. The first is simply the uncertainty: I had no way of knowing the schedule or plan for the event, nor did I know if anyone I knew well would be attending. The second is the number of people and the accompanying audio and visual (and potentially olfactory) stimulation. I often have significant anxiety or discomfort in church every Sunday because of this factor, and there was no reason to expect it to be different at this event. A third reason is my desire to appear normal and fit in; I really don’t like attention and so I somehow needed to find a way to handle any stress without looking like I was stressed (this is called masking).

Fortunately, as a 29 year-old, I’ve developed a few strategies for coping with these challenges.

To deal with my uncertainty, I thought back to other group events I’ve been to in the past and created a potential outline for the night: mingling, some talking from the front, maybe some music, probably some discussion questions. Other than knowing that mingling always comes first, I figured the schedule would be some modular arrangement of those four activity types, and I would just need to be prepared for all of them. I put my smile on, focused on looking at least near people’s faces when conversing, and thought of some basic questions to bring up that no one would be offended by (like asking about their previous experiences with the women’s ministry at our church – a particularly good icebreaker for the kickoff event for a new semester).

For coping with sensory overload (during both mingling and music) and for staying focused during the presentations from the front, I brought my fidget cube and a pen and paper. I am not really a note-taker, but writing is a fairly effective stim when listening to a speaker; the fidget cube is perfect during discussion and small talk as it is small and discreet, and can even be used during music. My goal for the night was not to pick my skin at all, and thanks to near-constant use of my alternate stims I mostly succeeded! I definitely flapped a lot in the car on my way home to shake off the tense/overloaded feeling though 🙂

[Flapping connects back to the masking issue: hand-flapping has never been a major stim for me because it is just such a big obvious motion and I feel extremely anxious and self-conscious if I do it anywhere anyone can see me. Skin-picking is more typically more subtle (unless I start bleeding…), as is rubbing my fingers together back and forth, and the fidget cube and writing are almost normal. But as I’ve been learning more about the purpose of stimming, which is to help the body cope with sensory processing difficulties, I’ve been trying to give my body opportunities to stim naturally without instantly shutting it down because of my social anxiety. Right now that looks like stepping out of an overwhelming environment and letting my body work through the overload before going back or moving on to something else, and finding a more private space where I can relax in the way that works most efficiently for me. Bluntly, I’ll leave church a few minutes early (like I always have, to pick up the kids), and instead of just walking to their classrooms I’ll let myself flap on the way; it only takes a minute or so and it decreases my inner tension so much.

Also I dislike the word “flap” but that’s what the action is usually called so it’s not really up to me to rename it…]

Anyway, the event was overall a success! Was it exhausting? Yes, of course – but it was also spiritually encouraging. I got to be with other women who love God, talking about Him, reading His word, singing songs of praise and worship to Him, and I even got to have a long-ish chat (far away from the realm of small talk) at the end of the night with an incredible woman who I deeply respect for a number of reasons, leaving me better equipped to pray for her and for family.

While my definition of a challenge may be very different than yours, I think it is true for everyone that it is sometimes very worthwhile to attempt challenging things – and that it is always worthwhile to give yourself the compassion, understanding, and acceptance needed to adequately prepare for and evaluate yourself during those challenging things. These were some of the ways I accepted and made accommodations for my own struggles (instead of telling myself I should just fight through them and be normal) – what are some of your strategies for doing so?

Posted in musings

accepting autism when I want to be normal

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.

Posted in musings

not a hugger

Every time we go to the zoo, we have to walk through the gift shop (it is strategically placed at the exit so that you literally have to go through it to leave, and the blast of air conditioning does feel nice this time of year anyways), and lately they have had a shirt on display that really speaks to me:

IMG_3378.jpg
(Image description: gray tank top on a manikin on a gift store display table, with a picture of a hedgehog holding a cactus with the words “Not a Hugger”)

It’s not that I don’t like hugs, exactly… it’s just that if I never had to hug someone else for reasons of perpetuating my friendship with said person, I would be quite happy. And while I do like hugging my kids and understand the importance of it for connecting with them, there have been many times when I’ve had to do deep breathing exercises because they were simply too close for too long.

Also that hedgehog is adorable. Maybe I could get away with being more prickly if I were also more adorable, in a hedgehog-esque fashion… 😉


The Differently Wired giveaway is still open! Just leave a comment on the giveaway post and I’ll enter you in the drawing. I guarantee this is a book you won’t want to miss.

Posted in family life, information, musings

responding to an autism diagnosis

We received Rondel’s clinical report today, with his official diagnosis of autism spectrum disorder. It was definitely not unexpected, and in many ways it is a huge relief to finally have it on paper with a physician’s signature and notes.

But it is also very hard to read through the report and take in the medical assessment of my child, who I see in all his brilliance and originality and intelligence, and who is being evaluated in light of his struggles and deficits. It is the very embodiment of the pathology paradigm, particularly given the list of recommendations at the end of the report that includes ABA, a therapy that is consistently attacked by autistic adults who experienced it as children. It reminded me of why we used the NODA app for diagnosis in the first place: so that Rondel wouldn’t need to be exposed to the pathology mindset, but would still be able to obtain a diagnosis for support, self-advocacy, and understanding. I just forgot that I as the parent would still have to deal with all of that negativity on his behalf, and buffer him against it.

In an ideal world, doctors could still assign the autism label without calling it a disorder. There are definite differences between the way the autistic mind functions – in the way it perceives the world, in the way it processes information, and in the way it prefers to interact with other people and objects – and the way the majority of minds (neurotypical minds) function. What people often miss, including doctors and therapists, is that the autistic wiring comes with its own unique strengths as well as its own unique weaknesses. A diagnostic process that sought to exist within the neurodiversity paradigm rather than the pathology paradigm could look for examples of both these strengths and these weaknesses, to generate a complete picture of the individual, and to help develop specific plans of support for the individual. In other words, for example: you have autism, and so you struggle with sarcasm and implied humor, you have difficulty reading facial expressions, social interactions and small talk take a lot of energy because of how hard you have to work to keep up and fit in, and certain noises and smells make you want to curl up into a ball or run away – but you also have a mind like a steel trap, the ability to make connections between information and ideas, unique ways of solving problems, and intense loyalty towards the people you are attached to. How can we craft your daily routine to take advantage of your strengths without putting too much pressure on you in your areas of weakness? That would be useful and practical support, without pathologizing the condition.

The pathology paradigm shows up in other places than the medical profession, though. Even a shift in the diagnostic process would take a while to seep through the culture – and until the culture changes, a diagnosis of autism is still going to be met by attempts to sympathize over the tragedy of it, doubt (because your child doesn’t look like he has autism), pseudoscientific “cures”, and even blatant disbelief.

What I wish I could tell everyone I know is that I am not sad or upset at all by Rondel’s diagnosis. His mind is different, and it is different in a beautiful and wonderful way. Will he struggle in a neurotypical society because of those differences? Probably so. But with love and practical support, he can also flourish and give to the world using his unique gifts and talents. He has the focus and the interest to immerse himself deeply in a topic and absorb everything there is to know about it. He has the imagination to see past the status quo and envision new ways of being and doing. And he has support around him to help develop his emotional awareness and executive functioning (two things that were a struggle for me well into adulthood).

What I wish everyone knew is that autism doesn’t just look like one thing. It might look like a mostly non-verbal ten year old communicating in one or two word phrases, dumping out every toy box and taking apart every Duplo tower, standing with the outdoor curtains blowing against his cheek to calm his body down, dancing to his favorite music videos, wanting to be part of the social action around him even as it overwhelms him. It might look like a very verbal twelve year old swinging endlessly because the sensation is so enjoyable, singing the same made-up song over and over again because the repetitive loop is comfortable and fun and transitioning to something else is hard, identifying what day of the week any date falls on, and communicating the love of God in profound and beautiful words. It might look like a four year old melting down because the color he used on his picture doesn’t look the way he expected, talking nonstop to manage auditory input, mimicking the meter and pattern of books and songs in his own games with new characters and situations, wanting a parent to snuggle with him every night at bedtime, or demanding animal documentaries at every possible moment. It might look like an adult struggling to focus on assigned tasks at work because their mind is stuck on other less-prioritized projects, getting into arguments with their spouse because of missed non-verbal cues, falling apart at movies because the emotions and sensations are just too strong and overwhelming, crying because they are running fifteen minutes later than they wanted, or developing a new system of project tracking for their lab from scratch and becoming a source of expertise without formal training because of their analytical skills and desire to learn.

Labeling all of those individuals as autistic helps them to obtain the support they need for the shared weaknesses that accompany the condition (weaknesses partially but not entirely due to living in a neurotypical society), but it doesn’t predict what they will do with their strengths and how their lives will play out. We are just as unique as neurotypical individuals in that regard! I believe – and this is why I think the neurodiversity paradigm is so critical – that if we can stop thinking of neurodivergence as disordered we can create better conditions for autistic and other neurodivergent individuals, a culture where all people can receive support in their areas of weakness and be given the opportunity to explore, develop, and contribute in their areas of strength.

What I wish everyone could see is that the autistic way of seeing and perceiving the world is also beautiful. That a person’s thoughts and feelings are equally valid whether they prefer to speak them, write them down, sign them, or use an assisted communication device. That the same processing circuits that cause us to flap our hands or scratch our arms or chew on our clothes to stay regulated are the same ones that allow us to retain incredibly detailed information and connect seemingly unrelated data in relevant and insightful ways. That the honesty and authenticity that keeps us from betraying or lying to the people we love makes up for our tendency to laugh at the wrong moments in a conversation or our inability to pick up on all your sarcasm or implied humor. That while we may experience and exist in a different way than you do, our differences do not make us less than you.

As an autistic adult (without an official diagnosis yet) raising an autistic child (now with an official diagnosis, hooray!), my plan for “treatment” consists mostly of helping Rondel to understand himself and to understand the world around him, cope with the things that are difficult and embrace the things that give him passion and fulfillment; and of prizing the wonderful individual that he is, and giving him the support he needs (right now, practically, speech therapy and mindfulness practice) to keep his areas of weakness from overshadowing and hindering his talents and strengths. It does not and will never include considering him to be disordered because his mind doesn’t function within that narrow range deemed “normal” or “typical” by the DSM.