Ask an Aspergirl

Essays and poems about Autistic experience, mental illness, & (post-) ABD life

Category: words

I don’t want to write about the fog anymore.

The writing starts in my fingers — trying to capture these shreds of words, of stories. This writing comes from the silences — from this void of understanding. My hands want to write; my brain doesn’t know where to begin — why aren’t I writing? Because every scrap of concentration I have left goes into this never-ending exercise in proving myself.

My tired head doesn’t know how to find the words, the inclination — that longing, searching for home voice is lost — in the never enough time; not the right words for a state that lingers. If I could run screaming from this ache, I would. But alas, I would take this fog with me.

Long-silenced voices sometimes forget how to speak. How to form the space between this is where I am and where I could be. What happens to voices in the absence of words — when lingering forms still have no answer? When this ache is largely invisible.

When all I know how to say is okay and the safe places feel so ephemeral. They are a step-over back into words that mean nothing again. It’s scary not to care because caring hurts too much. Pushing through the apathy when everything beyond it feels wobbly and uncertain.

When there is not enough and too much time — I don’t want to write about the fog anymore. My pen cannot begin to describe how little I feel.

I remember when the words flooded this brain onto page — when there were no feelings — only thoughts. But there were feelings, just a lack of recognition — good, bad — that was it. I fear I have returned there; no grey, no nuance, just the silence of a black and white photograph that never really developed.

I fear losing this voice entirely; the narrator, the comforter, the seeing outside at all. I don’t know what to call this in-between anymore. When it just keep going and drags me with it.

The writing left with the joy as the fog descended. Then cleared, only to return, refusing further description.

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On not writing

What if I wrote about not writing, the why’s and hows are not enough; at best they are guesses. Trying to pin down a brain trying to float away. How do I write about this space that bores me to be with for too long; who can I blame for this disappointment — how some brains get lost in the middle of things and that is terrifying.

How do I write about how little I trust myself with hope buried underground; where is the autopilot in standing still. In forgetting my own history. Of feeling lacking for too long, waiting to prove myself right. When words will not stay under my pen.

Where is the poetry in exhaustion, in tiring of being tired; when steps require waiting and there is nowhere to flee; lost in myself. Filled with far too many I don’t knows. When there are no questions or answers. Just absence and a grief for what I fear will not be. I bury my hope. To keep her safe. She sends herself further underground.

She loses her words, only left with a distant moan; afraid she is hoarse from years of screaming. Is stillness any different from giving up — when focus is lost and words are weighted down by weariness.

Will words convince a brain trying not to move too fast? Lest it be seen after far too many attempts at its silencing. Where do the words go when she is gone? Is there a story in standing still, in forcing movement?

I am impatient with absence. With presence. With a fog that will not lift. That threatens with uncertainties and lingering fears waiting to be proved right.

Who will pilot this vessel through the storm, against the rocks, into a deep starless night?

Reframed narratives and Autistic experience

Cynthia Kim, an Autistic blogger and non-fiction writer, includes a passage in her book, I Think I Might Be Autistic that resonated with me:

“There are other people like me! I’m not defective. I’m not randomly weird. I’m an Aspie. One of many.”

In response, I wrote in the margins of my copy: “And this is an incredibly powerful statement, telling shame to fuck off.” (I’ve noticed that as I’ve found ways to manage the anxiety, my expletive usage has increased considerably. Part of me still feels apologetic; the rest is strangely amused.)

It’s been nearly two years since I began this process: exploring the possibility that I might be on the spectrum, not ready to call myself “Autistic” (wondering if I fit anywhere) and lingering on passages from Rudy Simone’s books and later the writings of autistic bloggers. Last summer, I wrote a series of poems exploring Autistic identity; I called them my proud poems, after Laura Hershey’s “You Get Proud By Practicing.”

These are your bits of narrative. Claim them. Embrace them. Feel them out. This is not a rejection of the self you knew — this is a renaming, an honoring.

Not weird — othered or strange — different perhaps, quirky — autistic in a way you haven’t all the way acknowledged. Every word but that one. Yes, this is a thing.

Last night at open mike, I read these words aloud. I spent the evening moving my Tangle back and forth between my fingers. Perhaps I was trying to lessen my nerves about reading in front of a crowd. It’s like Fight Club, I said to the friend siting beside me; if I attend open mike, I have to read. I realized sitting in my seat, that I would be calling myself Autistic, claiming that identity for myself in front of a crowd that size. “What if I’m wrong?” I thought. “Remind me why I’m outing myself in a public setting.”

Because this is the night of #shediditanyway, I told myself. When women share their stories with one another, maybe from the professional distance of 3rd person, but these are our narratives. You want to be part of that experience, even though you’re scared.

So I shared two proud poems, amongst the shaking of my legs and the audience before me. I’d already witnessed the tears and snaps that accompanied the other women’s poetry. They clapped. I walked back to my seat; the night continued. A friend from school hugged me afterward, telling me she loved “She Did it Anyway,” a poem that began as a shaming. In retelling that experience of shame, I wanted to find another story.

I’ve attended womyn’s writing circle these last two years as well. I started attending this group the same semester I started the PhD program, the same semester I acknowledged to myself, “I think I might be autistic.” I love the carefully worded nature of Kim’s title — how it reflected my experience of exploring my own identity. I think… I might be… It’s harder to form the words that follow because I could be wrong. And that’s still terrifying.

I’ve written so many versions of this narrative — why no one noticed my autistic traits as a child or even adolescent, then young adult (until they did), how I successfully completed undergrad, and where I made friends. Questions remain about what happens to Autistic adults like me — seemingly unicorns, whose therapists ask, “You mean Asperger’s, right,” even though it had been a year since ASD encompassed the entire spectrum.

We become incredible self-advocates — keepers of our own stories — because we have to — to be ourselves; to find a measure of self-understanding. As we learn to believe ourselves. Of course this is a thing, she replied.

My Autistic experience is a series of narratives — reframed, retold, and sometimes rewritten entirely. And the first page will state, in a voice that is growing louder, “She did it anyway.”

The contextual language of autism

I’ve previously written about how my lived experiences have shaped my interest in social-emotional supports for autistic women. Because of this research background, I find myself in conversations with strangers in cafes about the etiology and outcomes of autism. We inevitably talk about the seemingly increasing rates of autism diagnosis (and review correlation vs. causation) or about their neighbor’s quirky child (playfully mocking stereotypes about autistic boys who love trains). At some point in the conversation, I mention my interest in developing useful programming for autistic women and attempt to steer the dialogue away from my background.

In these impromptu autism discussions, I consciously use identity-first language — referring to autistic adults, rather than adults with autism. This is an intentional decision that reflects my identity formation as an autistic woman — a way for me to distance myself from medicalized language of deficits and pathologization of difference. I frame autism as another way of being that is characterized by social, communicative, and behavioral traits. Sometimes I give a brief explanation of the social model of disability.

In my department, I’m expected to use person-first language when discussing disability in an academic setting, including autism. When I talk with our program coordinator, I use person-first language (e.g., young woman diagnosed with autism spectrum disorder – ASD). The identity politics of labels rarely becomes part of such discussions; person-first language is assumed to be the most respectful way to talk about disability issues.

When I began exploring the possibility that I was on the autism spectrum, I reviewed the DSM-IV criteria  and realized I met criteria for Asperger syndrome (AS). Since I didn’t have a clinical label, I said I was an Aspergirl, using Rudy Simone’s invented term from her book of the same name. It felt disingenuous to say I was an Aspie or Aspergian since I was only self-identified (or as I prefer, self-recognized) as such. In online settings and among trusted friends, I started referring to myself as an Autistic woman when I studied the DSM-5 criteria for ASD and acknowledged these traits were consistent with my experiences.

I suppose my contextually-based use of identity-first language or person-first language is a form of code-switching. My word choice changes depending on the types of listeners involved. In professional settings, I use person-first language since this practice is embedded in Special Education culture. In personal settings, I use identity-first language because autistic traits deeply influence my experience of the world. I find the language of disability utterly fascinating, especially as I’ve begun researching the social worlds of autistic women like myself.

I remember writing my Twitter bio and wondering if I was allowed to call myself Autistic. Would I be appropriating the experience of people who’d received a clinical label after days of testing and sharing their story with a stranger? Was I expecting other autistic people to judge me as I made sense of my experiences? This summer I wrote a series of poems about exploring autistic identity. These pieces felt like a series of conversations in which I was giving myself permission to call myself Autistic, if those traits resonated with me. I remember reading these lines to the women in my writing circle:

These are your bits of narrative. Claim them. Embrace them. Feel them out. This is not a rejection of the self you knew — this is a renaming, an honoring.

Not weird — othered or strange — different perhaps, quirky — autistic in a way you haven’t all the way acknowledged. Every word but that one. Yes, this is a thing.

I’m still trying to figure out how to be Autistic. I read journal articles about people like me, as I continue my graduate studies. I continue to have conversations about the autistic experience, realizing that my narrative is both shared and my own. Sometimes I feel like I’m pretending, but I’m reminded,

Pretending is something you do when you’re working through what is, imagining what could be. Acting as if — as you become the person you know you are.

The self-criticism machine

The self-criticism machine is sneaky. I can hear its gears slowly turning as words enter my brain and escape out of my mouth. I remember my first session with Dr. W (therapist lady) and the preface I expressed:

You’ll notice as we meet together each week that I interpret everything as criticism. No, seriously — everything. That neutral piece of feedback you provided, I will somehow interpret as “you are a deeply fucked up person who needs to change everything about herself.” This is how my brain works. I have no idea how to control its functioning.

Let me introduce you to the self-criticism machine:  Insert neutral statement into its cogs and watch my automatic thoughts about myself (“I am wrong.” “I don’t fit.” “I’m going to get stuck.”) spin these words into a deeply critical treatise on how flawed I am. This will subsequently be reinforced by actually critical things people have said to me and I have internalized — the casually spoken remarks that have chipped away at my sense of self. Perhaps you meant to sound constructive. Maybe I even needed to hear what you had to say, but your words will stay in my brain as a deeply critical statement about my being:

“You are wrong.” “You don’t fit.” “You’re not trying hard enough.” “I can’t believe you missed that.” — rinse and repeat

Unsurprisingly enough, I’ve learned to slow down the self-criticism machine using a combination of cognitive-behavioral strategies and a series of affirmations:

“You are enough.” “That thing you’re doing is so hard. I know that, but look at you. You keep trying and working, even though it’s difficult.” “There is nothing wrong with you.” “You are known and loved — because of, not in spite of — yourself.” “There are people who care deeply about you. They’ve stated that both directly and indirectly.” “You can do this.”

In the midst of all of this, I wonder, “How did I become so critical of  myself?” Perhaps in having to pass as relatively neurotypical (or at least quirky), I internalized a sense of shame about who I am — an autistic young woman who is visibly different. I’m so afraid of not finding a place where I fit — maybe because it’s hard to keep pretending to be normal (whatever that means). Passing is exhausting. I think I’m feeling the effects of this process as I enter my mid-twenties.

I’m learning to refer to myself as autistic in everyday situations — to mention my autistic traits in my day-to-day conversations — and I’m gradually shedding this internalized sense of shame. As I tap my fingers together in the local cafe, I’m giving myself permission to stim when I feel overloaded. When I send my PhD mentor or chaplain friend blog posts I’ve written about being an autistic woman in an NT world, I’m sharing the person I’ve always been. When I openly admit how hard it is to engage in small talk, I let  myself acknowledge that I’m struggling.

It’s okay to struggle, and in these conversations, the kind people I know — the ones with whom I can share my vulnerabilities — remind me they’re proud of me. They tell me I’m growing and strengthening. I’m becoming the autistic woman I’ve always been. She is freeing herself from the gears of the self-criticism machine as she inserts love into its cogs.

My mind’s aflutter in the quiet (with you)

Sitting, quiet, here with you — my mind’s aflutter — of things to do, questions left unanswered, wondering how you can just sit so calmly across from me; headphones in, fingers to keyboard as we both attempt at productivity.

My mind wanders to the not yet done, making lists, planning — getting lost in the will be. Where are you? The present feels elusive, the past fuzzy, in a created narrative designed to fit my expectations of what is now.

Sitting with you in the quiet, I’m waiting — maybe to pull the scattered pieces of myself back together. Where do you go mind when you’re not quite here? Thoughts going to the not here in the space between our words — anticipating your words; wondering if they’ll express where I am.

In the litany of things, I wonder where I am between —

How are you? (There’s a space between the dialogue.)

Okay — that’s all I’ve been for a while, wondering what’s beyond the managing, the getting through, the doing the next thing. (I suspect you want to hear I’m okay — an emotionless word for a state of being.)

And I wonder what it would be like to describe a state that feels slower — the just getting by — a feeling good that isn’t between periods of not yet. We have slowed the pace for a minute, maybe a 50-minute hour, catching up with myself — as I wonder about the realness of my own experience.

Is that what I’m thinking or feeling? Would naming it help — if a response to alleviate this state feels far away?

I am scattered before you as I attempt to describe this litany of concerns, maybe worries — outside the conversational to the just is — not knowing how you’ll respond and then trying to convey these thoughts — wondering if they’ll make sense to you.

“Managing is hard,” she said deliberately.

Borrowed dreams

They lived in a drafty old house with an attached chemistry lab — Bunsen burner stew simmering there. I spent my days huddled over their lives. I shared her attic bedroom on the windy nights when she wondered why she didn’t fit — Meg Murry and I. Fortinbras barked at the intruders; ours came from within.

I lingered over L’Engle’s novels living amongst their borrowed dreams — the heroines making sense of themselves, trying to reach a preplanned ending. I return to the fantastic prose in times of stress — when I want to be in a familiar dialogue. We have an understanding, L’Engle and I.

Her father was distant, but kind — a scientist trapped in a sideways world, while mine was all too close, and lived with a lingering bitterness: “My dad wasn’t a nice man, so I stay far away.” Not so much a borrowed dream as an all-too present reality.

They sat together in their kitchen, making cocoa on the stove — we sat on the bed watching B-grade horror films. She lived with the memories of a father she used to have; mine alternated between acquiescent planning and altogether unpredictability.

She reminded me of a strength in difference, “The foolish and the weak shaming that which was mighty and wise.” A love stronger than IT. I lived with an absence and ever-present reminder of what could be — what never was — carving out my own narrative in which I longed to be separate, not too close.

They visited at holidays; I found my ways to stay away, developing a language of boundaries and what is — and yet L’Engle’s narrative of far-flung figures coming back appeals to me. I had my own Aunt Beasts — those middle-aged wise women whose capacity for listening exceeded my knowledge.

I felt enveloped by their listening and space for my words, rather than their looking for space of their own. I borrowed these visions of women who were where I’d like to be. There was a quiet strength in their acknowledgement. I can make space for you. I’m okay — maybe you’ll be too.

I returned to these young adult shelves to find a quiet that was unfamiliar — borrowed — in these stories of becoming — in these linear narratives. Mine was windier and there was a comfort in these fictional heroines, mothering and reassuring me — steadying me.

As I integrated their words into my own narrative — their dialogue borrowed, in a space we’d made in fiction.

Womyn’s Herstory Month

remind me everything is okayMarch is Womyn’s Herstory Month. The lady who facilitates my writing circle challenged us to “write one daily, poem, story, reflection, song, blog, memoir, tribute, or manifesto about womyn.” I’ve done so via the Tumblr as I’ve pondered my experiences as a woman and the mentors I’ve had. I’ve thought about how sharing our stories can be a way of reassuring others that it will be okay.

There are times when I get tired of explaining myself — why particular stressors are so anxiety inducing or why parts of my familial history still evoke a dull ache. It’s so validating when I begin to tell my story and I’m met with the mutual understanding that comes from a shared lived experience.

“You get it, don’t you? I’m not exactly sure why, but I suspect you have a story like mine. I don’t presume that you want to share it with me, but it helps that you’re listening. That you ask fewer questions because you know what it’s like to feel complicated, even though that’s no fault of your own. I wish you didn’t have to get it, but I’m glad you do.”

Sometimes storytelling happens in the car at the end of the day, when your social filters have stopped working or you’re just so exhausted, you let them come down. Other times, you hear that pause in their story — you have it too. The parts of your life you also avoid sharing in polite conversation. You don’t really want to hear about that do you? But then you tell your story and they recognize your experience in their own. Stories are powerful.

When I find a friend, who gets it — really gets it — she becomes the person I finally feel safe enough to text or message via social media platform when things don’t feel okay. When I’m sitting in a waiting room terrified to see the chaplain fellow because I still find men intimidating. When I’ve just ended a phone call and need someone to help me process that interchange. When the waves of anxiety hit so hard I feel like I’m falling apart — again. When I need to acknowledge that I’m hurting (“so many sads”). These are the women who will support me in these moments; they don’t need me to be anyone other than myself.

Sharing one’s story makes it feel real. I think that was the hardest part of growing up in a home where my closest confidant was my journal. I feared that if I couldn’t describe the experience, it didn’t exist. Even into college, I wrote notes to myself (and prayers) trying to figure out what I was thinking (and sometimes feeling — those words seemed hardest to find).

I’ve shared my backstory in bits and pieces over the years. I suppose I first began this process in undergrad, when I walked around the track surrounding the man-made lake and talked with close friends. “So I’ve been going to therapy and it’s been helping.” The first poem I ever wrote in writing circle included these lines: “Cacophony is the sound I hear from my room, as I sit huddled over a book, again — weekly, monthly, it feels like forever; as we sit with the door closed and the lights on.” I learned to share the words I’d written on the page before me. My notebook was a conduit for further conversation.

So this March, I’ll keep writing, while I remember that “I deserve to take up space, even when I have no words to say, because I matter.” Let us continue to intently listen to the stories of our fellow women and create spaces where we feel loved and supported.

Polaroids sent from the past

polaroid by ed__209

polaroid of polaroid by ed__209 (via Flickr: http://goo.gl/OsKH32, Creative Commons – Attribution, Noncommercial)

As I made the phone call to my childhood pastor, I had a series of questions handwritten in the notebook sitting beside me on the plastic kitchen table:

How did our family look to you? What roles did mom and dad play — especially in context of what you knew? To what extent (if any) did you suspect familial discord — why or why not? What were your perceptions of me growing up — of our family, of mom?

I had emailed pastor the previous week, asking if he’d be willing to have a conversation about my experiences in his congregation while we attended there. I told my therapist a few weeks prior that I was dealing with familial grief as I tried to make sense of my childhood narrative. I wondered if anyone outside my family noticed that we were troubled. I’ve long since acknowledged that my parents did what they could to take care of us, but at the same time there’s a vague sadness, sometimes frustration, with that past.

I’m writing because I’ve wondered about some of my experiences back then; since we moved, I kept up with few people from that time in my life. Growing up, my family was rather insular, so since undergrad, I’ve been trying to make sense of my childhood and early adolescence.

When we began the conversation, I acknowledged my fears about making that phone call — how I didn’t want him to think I was asking him to betray my parents’ confidence, if they’d shared anything with him. I just wondered about his impressions of our family. He answered some of my questions, and I discussed my life now — finishing undergrad and beginning grad school, how I promised myself I’d see a therapist when I started college (how it helped), and connecting with like-minded women who validated my story.

I felt surprisingly safe self-disclosing and took some notes. His recollections of me were relatively consistent with my own memories of being a “quiet, shy, self-conscious” girl (who I recognize was also pretty anxious). He said I was bright and intuitive even then, and that he was proud of me. I felt affirmed by this process of further developing my internal narrative.

After the phone call ended, I messaged a friend of mine who knew about the situation — the one who encouraged me, saying, “This is so brave and cool of you. I feel like I need to tell you that you astound me with your courage on a regular basis.” I remember sitting on my floor couch reading her message before making the call — I reminded myself that I was brave in my attempts to fill in some of my childhood recollections.

Memory isn’t static. It’s dynamic. Ultimately we are the ones shaping our own narratives as we ponder details consistent with our stories and neglect those that don’t seem to fit. I’m learning to honor the emotional truth of my story, especially how it still reverberates with me now.

I feel as if I’m making a timeline of Polaroids sent from the past, but I’m waiting for the blurriness of the images to become a scene that makes sense. I long for a coherent narrative and maybe in the process, I’m arranging these images into a recognizable whole. My friend says, “It’s like you’re uncovering your story.” Maybe I’m creating it, too.

The problem of Susan and divergent narratives

childrens_fantasy

Children’s Fantasy (http://xkcd.com/693/)

“Whenever you’ve tried to get her to come and talk about Narnia or do anything about Narnia, she says ‘What wonderful memories you have! Fancy you still thinking about all those funny games we used to play when we were children.'”

“Oh Susan!” said Jill. “She’s interested in nothing nowadays except nylons and lipstick and invitations. She always was a jolly sight too keen on being grown-up.”

“Grown-up, indeed,” said the Lady Polly. “I wish she would grow up. She wasted all her school time wanting to be the age she is now, and she’ll waste all the rest of her life trying to stay that age. Her whole idea is to race on to the silliest time of one’s life as quick as she can and then stop there as long as she can.”

I didn’t know there was a name for the absence of Susan Pevensie in C.S. Lewis’s seventh book in the Narnia Series, The Last Battle, until I read Neil Gaiman’s short story, “The Problem of Susan” (1). Gaiman imagines what might have happened to Susan after the events of The Last Battle discussed in the above passage: She lost all of her family and made a life for herself as a professor of literature who specialized in children’s fiction. Professor Hastings (Susan’s surname in the story) discusses her post-Narnia existence with a journalist who was frustrated with Susan’s being left alone: “You know, that used to make me so angry…All the other kids go off to Paradise, and Susan can’t go.”

She seems to be remembering. And then she says, “I doubt there was much opportunity for nylons and lipsticks after her family was killed. There certainly wasn’t for me. A little money—less than one might imagine—from her parents’ estate, to lodge and feed her. No luxuries…”

Narnia readers have pondered what Susan’s life might have looked like and why Lewis left Susan to mourn her family’s death in the train crash alone (2-5). I happened upon E. Jade Lomax’s Tumblr; Hark, the Empty Highways Calling; and loved reading the alternative narrative of “Susan’s fabulous adventures after Narnia” (6). It’s fascinating how Susan as a character has moved beyond Lewis’s original text, one that essentially writes her out of the narrative through the dialogue of others, to the readers’ minds.

Although he alludes to the traditionally feminine — nylons, lipstick, and invitations — I’m more interested in others’ perceptions of Susan pushing herself to become an adult.  What does this mean in the context losing her belief in a literal Narnia?  For me, Susan’s story becomes part of a conversation about what we do with doubt and the pressure to conform.

It seems that the women in this conversation diminish the everyday dramas of young women such as Susan. Polly calls Susan silly and thinks she’s wasting her time doing stereotypically feminine activities. Maybe Susan is finally enjoying her post-war girlhood or realized that no one outside her family would believe her Narnian adventures happened. Why is the twenties considered the silliest time of one’s life?  Jill is critical of Susan’s behavior as well.

During this dialogue, I was reminded of Aslan’s reminder about respecting others’ internal narratives: “I am telling you your story, not hers. No one is told any story but their own” (7). Susan has doubts about her time in Narnia and explains her memories away as childhood fantasies. She chooses to live in a world she can experience and in which she can find pleasure. She probably wanted to fit in with her party-attending, nylon-wearing girlfriends. Lewis wrote to a young reader inquiring about Susan’s fate , “There’s plenty of time for her to mend and perhaps she will get to Aslan’s country in the end… in her own way.” But I wonder if Susan could build a life for herself outside of Narnia as she remembers her leadership qualities as a queen in Narnia and enjoy her femininity as well. 

Susan had her own story to tell. Maybe if her friends had asked Susan about the parties she’d attended, they could have partaken in her narrative and learned how she was becoming herself. The twenties can be a time for exploring one’s spiritual life as people ponder how childhood belief systems shaped their present thinking.

So dear readers, I’ll conclude this discussion with Lomax’s vision of Ms. Pevensie:

A lion told her to walk away, and she did. He forbade her magic, he forbade her her own kingdom, so she made her own. Susan Pevensie did not lose faith. She found it.

  1. The Problem of Susan: http://www.tumblr.com/tagged/the-problem-of-susan
  2. For my Narnia-loving feminists: http://groupthink.jezebel.com/for-my-narnia-loving-feminists-1481086667
  3. In Defense of Susan Pevensie: http://www.patheos.com/blogs/lovejoyfeminism/2012/09/in-defense-of-susan-pevensie.html
  4. Redeeming Susan Pevensie: http://www.patheos.com/blogs/slacktivist/2012/08/13/redeeming-susan-pevensie/
  5. The Question of Susan: http://slacktivist.typepad.com/slacktivist/2012/07/the-question-of-susan.html
  6. http://ink-splotch.tumblr.com/post/69470941562/there-comes-a-point-where-susan-who-was-the
  7. The Horse and His Boy by C.S. Lewis
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