Conversations About Autism: Siblings and the Spectrum
Please join us for Conversations About Autism. This month’s conversation is titled- Supporting Siblings both On and Off the Spectrum.
Come As You Are: An Autistic’s Perspective
Trigger Warning: Self-Harm
These thoughts… these four words, the phrase, “Come as you are, ” they’ve been circulating around in the back of my mind for the past three weeks now. It’s been becoming more constant, as I sit here, late morning coffee in hand and an hour and a half since I’ve taken the routine medication for my severe ADHD that I have had since childhood (doesn’t help that there’s been a massive shortage of these types of medications, inconsistent quality as well). It’s been becoming more constant, the struggles of keeping myself from doing something impulsive that I’ll probably later regret, just struggling in holding off from wanting to smash my head against the wall, bite others, or crying silently whilst lying on the frigid linoleum tiling of bathroom floor, but that’s not why you’re reading this (and besides, I’ve been racking my brain for three hours now to type out this blog post already, cursing myself out loud because try as hard as I might, I wasn’t able to cohesively put together even an brainstorming outline to plan ahead). What’s really helped me through these hard times is nature. Sunshine. And knowing that these hard times will pass, too. Sunshine, and video games.
Sorry for that tangent, readers. Though, maybe it does lead into the theme of Autism Acceptance Month and “Come as you are”. If you’ve been a long-time reader of the blog, you might remember that I’ve curated several contributions to The Autism Blog over the last decade, so I’m not exactly new at this. However, I’m distracted by everything and trying to just let it be, without punishing myself, or at the very least not as harshly. Trust me when I say that coming as I am certainly is a lifelong process.
Ya know what, how about I update you all on my positive aspects of my progress as an autistic living in a world that is clearly still, in the year two-thousand and twenty-three, not made for them? Look, I’m not dismissing or downplaying the unbelievably harsh days and moments of sensory peril, inattention, emotional dysregulation, deep depression, spatial unawareness, and all-around executive functioning challenges inherent to co-existing alongside neurodevelopmental and related disabilities. Not even close. Describing the intricacies of why I feel like I’m failing at “Come as you are” would take many pages of background and context, and I wish to respect your time. Let’s move on, then, shall we?
Continuing onto the updates to my life since my last blog during the early weeks of COVID, my life has generally changed for the better. I have since graduated college, from the UW, in the area of Maternal and Child Health, through the LEND program that further specializes in treating co-occurring conditions associated with I/DD and focusing on bettering the lives of individuals with these conditions. Took over 600 hours of didactic, clinical, and educational training, but I’d be lying if I said I weren’t proud of myself for accomplishing that. In addition, I’ve gone from being a student at the Alyssa Burnett Center, to an employee of Seattle Children’s Hospital ABC staff, working on the other side of the window, so to speak. I also teach and lecture postgraduate-level curriculum as Self-Advocate Faculty in the LEND program at the UW Medical Center main campus in Seattle. Last, but not least, I am part of the core ECHO hub team for ECHO Washington Autism/WAINCLUDE, which is closely related to UW CHDD and LEND. There, I work with other healthcare professionals from all walks of life, in an interdisciplinary team of providers virtually, to connect with other providers in the state and to teach best practices and share everyone’s knowledge about how we can all best serve the most marginalized groups and communities of individuals with I/DD.
Also, I want to point out that there have been major advances in committing to letting people come as they are. I can’t think of a better example of this than the Alyssa Burnett Center. Even if I am not feeling my best, it means everything to me to be able to work in an environment where my co-workers will take the time to check up on me, ask what I need, and for that, I am very grateful. Also, I’m allowed to stand and move around while working, provide large-print physical copies on needed documents, and stim in all the many ways I might need concentrate and regulate my sensory issues. Students can also come as they are. Everyone is welcome to come as they are to the ABC, so much so that the students even made their own acronym for it called RISE (Respect, Include, Support, Enjoy). It’s awesome!
If you’ve made it this far, thank you, reader. I’m happy you stayed until the end. I just wish I feel like I had my own version of accepting myself, letting myself come as you are. I’m working on that, but everything takes time. With that, until next time!
If you or someone you know is having thoughts of suicide or experiencing a mental health related crisis, call or text 988. You can also visit 988Lifeline.org to connect with a trained crisis counselor who can help.
Come As You Are is a Family Affair
My daughter, Audrey, is 24 years old and autistic. Our family has more than two decades of experience with autism acceptance and “coming as we are.” Here are 9 things that “come as you are” and Autism Acceptance Month bring to mind for me.
1. No one exemplifies “come as you are” like Audrey. She approaches every activity and experience in life as much as possible on her own terms. She dresses herself in familiar, comfortable clothes, even if they’re not weather-appropriate or are too threadbare for public consumption. For Audrey, the best treat at Starbucks is a paper cup filled with cold water (no ice) to go with her chocolate chip cookie. When she’s happy she makes big movements with her arms, and big sounds with her voice, with no thought to how other people will perceive her. She teaches me to see cool things I never would have discovered for myself, like how the mirrors at either end of the dairy shelves at the grocery store reflect our smiling faces into infinity when we lean in and look at them from just the right angle. And how little it matters that other shoppers might find this a strange thing to do.
Audrey (right), mom Joy (center) and sister Margaux (left) posing for a group selfie in matching frog hats
2. “Come as you are” means the whole family. When my girls were little, I was a tired, single mom managing work, all the usual parenting stuff, and an autistic child who needed constant supervision during the day and slept very little at night. Just like Audrey needs people to accept and support her differences, our whole family needed support simply to have friends or join community activities. There were many times when even picking up a box of crackers or a bag of fruit for a potluck felt like too much. “Come as you are” meant being welcomed with open arms, even if we arrived with empty ones.
3. Sometimes we can’t all “come as we are” at the same time. Audrey has her needs, her sister has others, and I have my own. It’s hard when people in a family have different, competing needs. It’s even harder when one of those people is at the “higher support needs” end of the autism spectrum. Even with all our love for one another and the best of intentions, it’s a struggle to create the balance and space everyone should have to thrive.
4. Autism acceptance is what lets us “come as we are.” We choose to go places that welcome us, all our quirks and extra needs included. The neighborhood restaurant where everyone gives Audrey her favored high-five in greeting and no one cringes when she lets out her loudest happy whoops. The aquatic centers that accept my promise that she can swim safely in the deep end, even though she won’t do their safety test to prove it. The dear friends who invite us back again and again, no matter what Audrey’s oddball pursuit of the moment is – trying out all the showers with her clothes on, burrowing under the fitted sheets of every bed in their house.
Audrey swinging high at a local park – one of her favorite activities
5. There aren’t enough places where Audrey and our family can truly “come as we are.” Even services supposedly designed to meet her needs as a disabled person are often not able to do so. The burden of fitting in is still very much placed on Audrey, which means her world is very small, her scope of experience sadly limited.
6. Making space for us all to “come as we are” is not just about acceptance, but about policies and budget decisions that create the resources autistic people need to thrive. The support agencies and delivery systems in our state are difficult to navigate and are failing to meet the needs of many of our families. Advocating for better funding and more robust services at the state and federal level is crucially important.
7. It is when Audrey is invited to truly “come as you are” that she blossoms and grows. I have seen her shut down and stop communicating for months at a time when she’s surrounded by people who don’t understand her or believe in her abilities – or she might fall back on behaviors like biting her own hands until they bleed to convey how she feels. But with supportive communication partners who expect her to succeed, she glows with excitement at each small step forward she achieves.
8. “Come as you are” means authentic acceptance of how Audrey’s autism impacts her. It means helping her overcome the aspects of her autism that make life hard for her – finding sensory activities that help her body settle and expanding her language communication to reduce her frustrations. It means acknowledging her vulnerability and the level of support she needs from others to live her fullest life.
Audrey enjoying the patterns on her lego blocks
9. When families like mine are invited to “come as we are,” it enriches lives beyond ours. I wish everyone could spend an afternoon with Audrey and experience the creative ways she examines the world, her enthusiasm for simple pleasures, her silly sense of humor. I hope that as autism acceptance grows in our society, it brings with it that deeper commitment to generous values and the concrete policies and actions that will make it possible for all of us to truly come as we are.
Visit the Seattle Children’s Autism Center Patient and Family Resources page to find autism resources for your own family, and connect with advocacy organizations seeking to improve the lives of families and individuals with autism.
You can learn more about Seattle Children’s invitation to “come as you are” for Autism Acceptance Month on The Autism Blog or by following the Autism Center’s Facebook page.
Conversations About Autism: Speaking About Diagnosis
Please join us for Conversations About Autism. This month’s conversation is titled – Talking to your Kids About Their Diagnosis of Autism.
Come As You Are to the ABC
A setting where someone could show up as exactly themselves and be celebrated for it.
For years I drove past a nondescript gray building on my way to class every day. Each time I passed it I wondered, “what do they do there?” When I saw the name of that building on the list of choices for volunteer options for my final quarter of school, I thought it was time I found out. I listed the Alyssa Burnett Center (ABC) as my top choice, with no idea what I was walking into. In part I chose it because it was unknown, I thought it would be a good opportunity to learn something new and broaden my horizons. I was equal parts excited and skeptical. I knew almost nothing about Autism or Intellectual and Developmental Disabilities (IDD), and while I wanted the chance to learn, I had no idea what to expect.
Little did I know that random gray building I passed on my commute was going to become my favorite place on earth, the place that feels more like home than anywhere else, and the place that truly allows all who pass through the doors to come as they are.
Making a Blanket with Maria as a volunteer in Fabric Arts
My first days as a volunteer showed me the magic of the ABC, I learned alongside our students and instructors. I watched as the teachers stood by and let the students guide their experience here. Each person’s different needs were seen and met. I spent most of my volunteer classes sitting with one student, looking at different color threads and naming what other things were the same color as each spool. Yellow like sunshine. Red like strawberries. Blue like the backpack.
Perhaps from the outside looking in this would seem mundane, but for me it was enlightening. It was the first time I had been in a setting where someone could show up as exactly themselves and be celebrated for it.
Within a month of volunteering, I knew I had to figure out a way to stay. I applied for a job as a classroom assistant. I spent twelve weeks in classes like choir, where I watched our students belt out “Firework” by Katy Perry. They inspired me and before I knew it, I was singing along. Before that, it had been 20 years since I sang in front of anyone. I was nine years old the last time I sang aloud outside my home, when a friend told me I had a voice like nails on a chalkboard. That’s what our students do for us all. They give us a place where it doesn’t matter if you are tone-deaf, you can sing at the top of your lungs just for the joy of it.
In August I graduated from UW Bothell and applied for a full-time position at the Alyssa Burnett Center. When I started as our Family Services Coordinator I was introduced to a new layer of the beauty of the ABC; the relationships we have with our parents, caregivers, and friends that support the students here. I learned the depth of commitment that our families have to supporting our students in their journeys at the ABC and beyond.
Building LEGO’s with Mechelle during my time as a Classroom Assistant
Every day I get to find new and creative ways to let our students come as they are. Whether it’s writing sticky notes to different staff members for a student each day or walking them to class with Pokémon coloring sheets in hand. I watch our students show up on good days and hard. I watch them learn and grow change and adapt, and they inspire me to do the same. I take pride in the small ways I get to make their lives better and allow them to be themselves. I once spent the better part of an hour researching the type of train whistle on a 1929 alco built Hammond lumber company steam engine for a student, a Casey Jones whistle, in case anyone needs to know.
I find myself emulating ABC students in my personal life. Learning from the ways they do things and the ways they show up for themselves and others. When I was having an anxiety attack at Pike Place market, I used coping skills and anchor words I learned from our students to calm myself down. When I couldn’t teach my daughter how to self-regulate, I use strategies I learned from one of our parents to help guide her along. I aspire to bring the friendliness and warmth I see in students every day.
Our ABC Admin team at our Halloween Bingo Fundraiser
As I now watch the next round of volunteers become staff at the ABC, I understand more deeply the pull of the magic of this place: where staff, students, and families alike are working together to create a space where representation and diversity of all kinds are celebrated and anyone who needs a space like ours is welcomed with open arms.
Our students teach me every day to come as I am because they do. They show up as their authentic selves in every aspect. They walk into the ABC from a world that treats accommodations as inconveniences and find themselves in a place where their differences are celebrated, their needs are respected, a place where their goals passions and interests are valued.
ABC Team Bonding at Stoup Brewing in Kenmore
It’s not because of us, the employees and families that support our students, that they get to come as they are to the ABC. It’s all them. They show us how to adapt. How to ask for what we need. How to cope. How to try again. How to be silly. How to be creative. How to never be anything less than our most authentic selves. It’s because our students come as they are, that we get to too. Because they show us how.
What on the outside looks like a nondescript gray building we drive past but never really see is actually the most colorful place I’ve ever been. Where each of us get to show all our sides and shades together in safety and celebration. At the ABC we all truly do get to come as we are.
