showing up




Saturday morning ..

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Later that afternoon …


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And finally …


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I’m not sure how to write about that day – about attending the meeting, about being in, what felt to me, like that sacred space. I was nervous going in. I didn’t know what to expect, which, in and of itself, can be nerve-wracking. But more than anything, I feared that my presence might somehow compromise the sanctity of the space. The freedom to do, be and say anything in the comfort of knowing that everyone around you shares your neurology, and with it, at least some of your experiences.

I worried.

But I wanted to be there. It was an honor to be asked to attend the meeting — to not just sit behind my screen and write about being an ally, but to show up as one, live and in the flesh. To listen — really, truly LISTEN to what was going on in that room. To hear what their lives are like. Not in blog posts or e-mails, not in personal messages or even phone calls, but face to face. Meeting people “in real life” is different. It’s transformative. I wanted to be there. To offer myself up to help their cause in whatever ways I might.

But I am struggling with how to write about it. Because just as I felt that walking into that room might change it, I feel too as though my writing about it might make it seem less sacred, or God-forbid, less safe. But I have the blessing of the amazing people who were there, and so, I will write about just a couple of the thousands of things that I took away from that meeting.



Watching the interaction around that table was a lesson in humility. It looked like no other meeting I’ve ever attended. People took turns talking. They looked out for each other — when someone was trying to interject but couldn’t find his way into the conversation, someone else would alert the speaker to cede the floor. Every time.


When one person began to appear agitated, rocking in his chair with far more vigor than he had before, a hand went out to him. And a gentle question — “Are you okay?”

People were aware of each other, tuned into each other, in a way that I rarely see in a room full of NTs competing for airtime. It was beautiful. It was what we all should aspire to be.


Unemployment and underemployment are staggering problems. People who are eager to work and capable of working aren’t. People who have Master’s degrees are stamping letters in mail rooms. We have to figure this out. For them, and for us. And that doesn’t just mean software companies reaching out to autistic programmers, as wonderful a start as that may be. It means support – real programs with real help. It means understanding – job coaches and recruiters learning about autism (not the word, the people). It means an end to discrimination and abuse in the workplace so that everyone has the opportunity to contribute what they can and reap the reward of their participation. Period.

Housing. We know this. We have to fix this. We just have to.


I was blown away by the level of civic engagement in that room. You can argue of course that it’s to be expected in that the meeting itself was of an advocacy group, so, well, yeah, they’re advocates. Not exactly shocking. But ..

It was the degree and breadth of their advocacy that I found incredible.

I once wrote, There’s a desperate misperception in the autism community — I’d go so far as to call it a paralyzing fear in some corners — that so-called ‘high-functioning’ self-advocates (a term which I abhor, but which,  for the specific purpose of this discussion should be read as referring to people who are verbal, articulate and able to effectively and eloquently present their case in Washington) speak only for those like themselves. That they can’t possibly understand nor empathize with (yeah, I said it) the needs of those more severely impacted by autism. That their speaking up for their themselves and their needs will leave those with different, and at times more exigent, needs behind. 

I thought of those words as I sat in the meeting, listening to conversation after conversation, update after update, about the myriad advocacy efforts in which they are involved around the state and around the country. The level and wingspan of their involvement is incredible. Each and every person at that table was advocating for things far beyond the realm of what we might call self-interest. And this wasn’t just the verbal fighting for the nonverbal, as it were. This was advocacy throughout and surpassing autism: Insurance reform. Social Program reform. Legal reform. Disability Rights advocacy.

This was far, far bigger than self-interest. Unless you see, as everyone in that room so clearly did, that our self-interest is indeed served by fighting for the rights of the entirety of the human community.

Inspiration (keep reading, it’s not what you think)

I was blown away by how much everyone in that room is doing, day after day, to make our world a better place. I was inspired by their efforts. Not because they are autistic, or, as one young woman told me she prefers, have autism. But because they see what needs to be changed and they are up off their asses and fighting for that change. They are making their way to the capitol day after day. They are testifying. They are working on bills and actually creating the language that will become law. They are DOING the thankless and exhausting work that so many of us TALK about some mystical someone needing to do. They are stepping up to be that someone. And that inspires me.


There is something about the autistic expression of joy that simply makes me really happy to be human. I don’t know how else to say it.


I made new friends. The kind that feel, within minutes, like old ones. The kind whose gentle spirit and well of generosity you feel across a table. The kind who draw you in because you want so much to be in their presence.The ones who will cross the room and wrap you in the warmest, most comforting hug when you get emotional trying to say, “Thank you so very much for having me here.” Actually, I got through that part; it was when I said, “I can’t wait for the day that Brooke can come, if she is so inclined, and join a meeting like this. And I am so grateful that you all will be here for her when she does,” that I broke down and found myself in the sweetest, most gentle embrace.


I am overwhelmed with gratitude. For the invitation, for the welcome, for the warmth, for the openness, for the friendship. And above all, for all the work that these amazing people are doing to make life on this spinning globe better, not just for themselves, not just for my daughter, but for all of us who walk together toward the future.


To learn more about ASAN, click HERE.



19 thoughts on “showing up

  1. I have to say… with all the BS that had been going on recently in the ASD neighborhood of the blogging universe – this is so refreshing. What a wonderful experience to have and how totally awesome of you to share it with us. I, too, am glad that an organization like ASAN exists. They really do bust their asses to bring about change.

    People often comment on how necessary it is to make sure our children on the spectrum are prepared to integrate into a world that is not ready for them, that will not adapt to or accommodate them. And while admittedly there is a sad amount of truth to that sentiment, I tend to say “Well, fuck that.” Why should Autistic people bury who they are to make everyone else more comfortable? Why should they just suck it up and accept that the world just is the way it is and learn to adapt? For me, I have no desire to change my children to appease others – I WANT to change the world. And ASAN, they are doing A LOT to try and do just that. And it is my children, and everyone else’s, that stand to reap the rewards.

    Thanks for sharing your experience at ASAN with all of us. I am also “overwhelmed with gratitude.” Gratitude that there *is* a group out there working hard to change the world for all of our children, and gratitude that there are parents such as yourself that can make sure the rest of us remember just how hard and ongoing that work is. As (I believe) Amy Sequenzia said not too long ago about the Autistic community and what it is fighting for right now, “This is our civil rights moment.” And I whole-heartedly agree.

    • Thank you for this. And I couldn’t agree more – this is absolutely the next frontier of the Civil Rights Movement.

  2. Yes! Yes! YES! Wonderful. Wonderful. So glad you went. So happy to see my experience reflected in yours or wait, is it the other way around or some other version of that thought… you know what I mean, right? :/
    It’s a civil rights movement for sure, but it’s also a human rights movement. And that’s something every single human being on this earth, I hope, will come to see and get behind.

  3. What a beautiful blog you have written. This quote really got to me: “There is something about the autistic expression of joy that simply makes me really happy to be human.” I have a nephew with autism and his expressions of joy at simple things like bubble baths and birthday cakes are beyond beautiful to watch. I have two teen girls of my own, and I use humor in my blog to cope with challenges of raising children. I’ll be following your inspirational writings.

  4. So awesome! Thank you many times over!! Our girls and all our kiddos are going to change this world! No doubt about it! : )

  5. Thank you for sharing this with us. I think you really captured the spirit of the event in this piece and I’m happy to get a sense of what it was like!

  6. There is so much I could say, but what you said about joy is stuck in my mind.
    For his twenty-first birthday, I surprised (with ample warning, of course) my Aspie boyfriend by taking him on a road trip to Kansas to see two of his favorite things: Elephants and Miniatures. I watched him jump, squeal, and cry with joy as we sat at the elephant exhibit at the zoo for two hours. We got some weird looks, but it didn’t matter. He felt pure and unalderated joy, and boy was it contagious! When we went to see miniatures, which I frankly didn’t see any appeal in, he was able to articulate the things that he could see in them. The perspective into his world was incredible. We went at a time we knew wouldn’t be busy, so Elijah could experience joy exactly as he does (rather than dealing with other museum patrons who would demand quiet/stillness), bouncing, squealing, giggling, and flapping. As I described it at the end of the day, “Say what you will about how a 21-year-old ‘should’ behave in public, but I’d much rather watch my boyfriend exude joy in his every action than attempt to comply with unwarranted expectations.”

  7. I am so proud to be part of this community, and so glad you articulated what you did. Your observations match mine of the meetings I have been part of. People watch out for each other, people are sensitive to each other in a way few non-Aspies are simply because they’ve been there, and they don’t want others to suffer.

  8. I’m so glad you wrote about your experience and were able to share it in this manner. What a wonderful experience. (and yes to the Joy)

  9. Pingback: attending my first Autistic Self Advocacy Network Meeting | Outrunning The Storm

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