"...the place in which we find ourselves is always one of negotiation" (part 1)

Finding my voice in James Baldwin amid the closure of Autism Speaks Canada

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This newsletter rests at the intersection of the unserious ramblings of a woman full of buttered rice and dad jokes and the somewhat sophisticated stories and essays of someone who knows just enough “smart” words to sound super intelligent and insightful.

What will today’s newsletter be? Hmm…

“And what of the families they serve?”

Autism Speaks Canada is reportedly closing its doors. I am unsure of the inner workings of the Canadian disability scene, so I do not know if this offshoot of the juggernaut that is the American Autism Speaks operates in the same exact manner as its “papa.” From reading their statement, unless I possess strong comprehension struggles (which I have been known to exhibit from time to time), it appears as though American operations will continue the collaborations and work that AS-Canada was doing.

This doesn’t read like the complete eradication of Autism Speaks’ presence in Canada. However, this does not matter to many. It feels like a victory and thus they are taking their laps, raising their glasses, and reminding the world what a cackle sounds like.

I have most of my conversations surrounding disability outside of social media these days. I have grown tired of the short commentary that swallows nuances with how loud it is. In one of these conversations the discussion of Autism Speaks’ Canadian division closing comes up. At this time, I hadn’t heard nor read any statements. This was news to me. And when told of their ending, I responded with, “and what of the families they serve?”

Again, I do not know how different they operate from America’s AS, and I do not know how similar they may be. Whatever I feel about an organization, I do know someone is being served…and they might not be served in the way that they deserve, but they are receiving something they otherwise would not have if not for that organization. That is the challenge you face within advocacy. And that is the challenge that far too many who claim to be advocates do not acknowledge; the competing needs of our community members, and the inequitable distribution of resources.

So, I asked, “and what of the families they serve?”

And because the autism community is so very farked when it comes to advocacy, the lines drawn so thickly and without sight nor care, it is declared that I “must like Autism Speaks.” This community has made an enemy of nuance, and it is counterproductive to my efforts and those whose work is foundational within it.

Instead of facing the very real possibility that organizations who fail, close their doors, and/or are absorbed into larger organizations will always leave the families who depend on them for some or most of their care and resources out in the cold, they decide to cheer, offer no alternative, and direct their ire my way.

They have now made me an enemy. Because I asked a question they were not equipped to answer. They are so wrapped up in creating monsters they can slay, that they don’t think about what happens when the beast is taken. Or whether the beast is truly a beast to those they help? Again, back to the complication with advocacy. You are tasked with telling the story of those you aim to help. But you are also to take on providing them with what it is that they require to move about this world. This can sometimes mean, often means, that what they need will be beyond what you need and probably even agree with. Not for you to decide though.

Far too many of our families live without choice. Or have to choose between many undesirable outcomes. If you are incapable of understanding this, what are you doing this work for? Advocacy ain’t slight work. You ain’t getting no awards. If you tear something down, you have to be prepared for the abandonment that many will surely feel because of it. Even if you felt it was the right thing to do. And if you are successful in tearing something down, you gotta have something in place to catch people when they fall.

That’s another issue within this community; we don’t carry padding. We don’t catch when our community members fall. We want to pull rugs but act surprised when people slip.

So, when I ask “and what of the families they serve,” this is not a question of support for the organization, it is one for the people. And it is one we should all ask ourselves when we want to break apart something. Provide a net aka more viable options and the privilege of choice to these families. Then…go break something. However, keep in mind, that many won’t see the thing you want to break as something that is harmful or less deserving of those families support…offering alternatives helps them to respond to your messaging. Many continue to support systems and institutions that are harmful because there is nothing else to fall back into. Nothing else that will hold them with the safety and security they deserve.

I am not without my issues with Autism Speaks. I am not without any praise, however. Individually, for my family, I have been more directly helped than harmed. My son received his first iPad from them. We met many families like ours on their massive walks every year, and we felt less alone. We found many resources that weren’t offered to us through our county’s disability office. If not for the resource fairs at their walks and on their site, we would not have received the care that my children received many years back.

Here comes that pesky nuance: my family benefited from the existence of Autism Speaks, but they didn’t do nearly enough for the size of their organization. Not just for my family but for others. When it comes to advocacy, I do it in layers. Myself, my children, my family, community, and everyone around us. I can see the advantages of an Autism Speaks for us at the time we needed them, and I can also picture a world where they no longer held the power they do within this world. I would welcome that day. If only we could build an organization that would rival its power and influence that would provide more direct aid to individuals and families impacted by autism.

Thing is, I don’t much care for organizations in general. Too much overhead costs that most of their funds are funneled towards. Autism Speaks was huge when we received my son’s iPad and attended the walks, gathered all those resources, etc. They only gave out 50 iPads. With none of the communication apps. We had to crowdfund for the Proloquo2Go my son uses today. At the time, they had no autistic board members, and I am unsure if they do today, but I do know they have several autistic folks that work on their social media, podcasts, and some other community outreach, but I am not sure about whether there are any on the board.

Autism Speaks is big on funding research and policymaking. Both of which I am a proponent of. I care not what some of these advocates claim, science is a necessity. However, all science ain’t good science, and you have to inject discernment and nuance into the mix. Policymaking is my jam and jelly. Cause a large part of why our lives are made so difficult is due to how society is structured in such a way that even our laws hold us down, keep us separated from everyone else. Many autism organizations are science oriented and into politics, but they put so much of their effort there that there’s little in the way of true direct assistance to our families. Money flows in and very little comes to the people. This isn’t just for Autism Speaks, this is for so many organizations, of all kinds.

In the words of James Baldwin, "the place in which we find ourselves is always one of negotiation," and it is this negotiation that defines the complex landscape of advocacy. The question "and what of the families they serve?" is not a defense of an organization but a challenge to all of us to reckon with the difficult realities of those who rely on these services. Advocacy, as Baldwin would remind us, is not simply about dismantling the systems we find flawed; it is about understanding and addressing the needs of those who are often left behind when these systems fall. Too often, the drive to "tear down" overlooks the very real consequences for the most vulnerable among us.

Without viable alternatives, the destruction of these institutions leaves families with fewer options and less support. True advocacy requires more than criticism—it demands a vision for something better, a safety net that catches those who would otherwise fall. Baldwin’s call to embrace the fullness of human experience, with all its contradictions and complexities, serves as a reminder that change must come not at the expense of the vulnerable, but with a mindful commitment to their care and dignity.

We live individual lives, unique and complex. Yet, we are connected to one another. Responsible for one another. Rise and fall with one another. That is what makes advocacy so hard. Because we are these individual threads tangled up in one another. We could build something beautifully strong together. But we often choose otherwise.

Y’all be easy. And love on one another.

Edited to add: I wrote this in parts. It wasn’t supposed to be that way but it was too long and I felt that it would be too “messy” so this post was part one. It gave information that would be foundational to the rest. I was thinking I didn’t need to explain this. This one could stand on its own. Sure, someone would accuse me of loving autism speaks. This would be frustrating as hell but…tolerable. What ended up being more of a source of irritation was that the reader would make the piece solely about autism speaks and what they actually do. This is solely my fault cause I went back and edited this post to make it seem as though it could standalone. Just in case I didn’t want to share the others. I feel this was a mistake. I just really didn’t want to make a super long post.

Lesson learned. I’ll share the follow up to this one soon.