Autism Month

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.

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.

April 1^st marks the beginning of Autism Acceptance Month when Seattle Children’s intentionally celebrates the individuality and strengths of people with autism.

There are many ways in which we can recognize and bring to the forefront the power of acceptance and advocacy for the autism community. This year, we celebrate with the theme “Come As You Are,” to welcome authentic perspectives and highlight the strengths of individuals with autism in our communities.

To kick off the month-long celebration, we have asked people to share their reflections on this year’s theme to empower every autistic person to thrive and fulfill their full potential.  Throughout this campaign, we recognize “Come As You Are” may not be easy or reflect everyone’s reality–we hope this theme can become an aspirational goal as we move towards action to a more inclusive and accepting society.

Read full post »

This is the second of a two-part series about how inclusion and support for autistic individuals and their families fared in Olympia this past legislative session. Part 2 provides an overview of support and inclusion for adults in our state. Part 1 addressed support for children and youth.

In 2021 we were bracing for severe cuts to disability services. Thanks to federal rescue funds and a quick turnaround from a state revenue nosedive, not only were services protected, we saw modest investment in long-term supports. Going into the 2022 session, advocates were ready to push for better access, and some legislators were ready to listen. Read full post »

We continue our Autism Month blog series with Autism Awareness, Acceptance and Action- Autism Month from a Provider Perspective from Jennifer Mannheim, ARNP at the Autism Center.

In 2000, according to the Centers for Disease Control and Prevention (CDC), 1 in 150 8-year-olds had autism. The most recent numbers from the CDC (based on data from 2018) show that now 1 in 44 8-year-olds have autism. Here is a link to the CDC website with those numbers. So, what happened in those 18 years? This is a question many people have Read full post »