Social Stories #1

Reflections on the Posts That Stayed with Me

Each week, certain posts echo louder than others, because they struck a nerve, held truth, or refused to let go. These are the posts that climbed into my brain and refused to leave. So now I’m dragging you into it too. Welcome to the chaos, the feels, and the overthinking. Sometimes deep, sometimes petty, always real.

Whew, this past week has been hell on my socials. I spent far more time than I wanted to writing post after post on “Profound Autism.” It started when I was scrolling on my personal Facebook and came across a shared post from the National Council of Severe Autism (yes, I follow them, cause I need to keep up with what is going on). The quoted post carried some tweets (are we still calling them tweets?) that discussed the “criteria for Profound Autism”). I am going to get into breaking those posts down later. That post was more confusing than upsetting. And that honestly surprised me. I figured I would hold more anger than anything. I think I am getting to the point in my advocacy where I am discerning those areas where anger serves me well, and where I need to put it aside.

This shared post by the NCSA was one of those moments. I allowed the anger to take a backseat and tried to understand what I was reading. And that is when I stirred with confusion, because I couldn’t understand how they felt Profound Autism was better for our children. The criteria hung on low IQ, not speaking (which is not the same as not being able to communicate), and age cutoffs (that was especially confusing). It prioritizes systems and professionals over families and lived experience. The entire discussion held in that post builds a framework that could very well justify segregation, institutionalization, or pity-based advocacy that erases my child’s personhood. But, like I wrote earlier, I am going to dissect that share later on.

This week’s social stories center on the posts I wrote because of that NCSA post. And the responses I received that kept me writing comments and new posts after that initial post.

Let’s get to it shall we:

Post #1

I read the post by a “severe autism” organization that was discussing the criteria for Profound Autism. I’m not deep diving into that post cause I already started a response to that.

The question I have is:

What do they think happens if they succeed in separating my son from the rest of autism?

If they were able to have their way and Profound autism made its way into the DSM, then what?

What do they feel would happen next?

Are they thinking my son would finally get the care he needs?

Or maybe they’re thinking the world would be more sympathetic if he were placed into a label that stripped away the nuances of his life?

Is it about control? A way to direct funding or shape policy by creating stories made just for institutions and lawmakers who struggle to grasp complexity?

Separation rarely leads to deeper care.

They are championing isolating my son. Institutionalization. Fewer rights. Less inclusion. Less investment in communication supports, autonomy, or belonging.

They are telling the world a story about my son that marks him as “too severe,” “too impaired,” “too difficult”

…someone who wouldn’t even be invited into conversations about his own life. Or someone who’s not even thought of within policy or futures planning.

They say, “This group has great needs but little research.”

But they contribute to the silence. They help feed the neglect.

And now they offer a definition that risks justifying more of it.

This designation doesn’t amplify more support, it absolves them off the responsibility they have in making the world more inclusive.

Separating my son from the broader autism community will not result in him being more seen and it leads to others not being seen. Why advocate for these systems to further decide who is worth supporting and who isn’t? Who will be seen and who will be warehoused?

So…

What will happen if my son is removed from the broader autism spectrum and placed with Profound Autism?

I suspect they don’t even know what they want to happen, let alone what would happen.

But maybe THEY DO. And that’s the real fear.

My comments in this one:

“If you have a child who self-harms or show aggression, the label of profound autism doesn’t ask what lies beneath those behaviors. It doesn’t seek to understand. Instead, it tells the world that the aggression is the autism. That the self-injury is the person.

This framing doesn’t lead to more compassionate, whole-body care. It leads to something else entirely.

It says: This is the body we medicate. This is the body we restrain. This is the body we hide away.

It says: This is not the body we teach. This is not the body we support with alternative communication.

Because “that would be lost on these bodies,” right?

But these bodies, our children’s bodies, are not lost. They are not empty. They are not unworthy of understanding. If the world stopped deciding who was reachable and started reaching anyway, we might finally see what’s been there all along.”

There are so many people who’ve told me that if my son ever learns to spell as a form of communication, then he must not be “profoundly autistic.” I’ve heard the same about other nonspeakers if they learned to spell or type, then suddenly they were never truly “profound,” as if the ability to communicate somehow cancels out their support needs.

Profound Autism is often hung heavily on the co-occurrence of intellectual disability. And I’m genuinely lost as to why so many people still believe that someone with an intellectual disability cannot learn to communicate. They can read. They can write. They can spell. The problem is not their ability, it’s what’s believed about their ability.

If we spend all this time defining people by what they supposedly can’t do, just to separate them from others on the spectrum, then what support will be left for those the world believes are incapable? We already see the consequences of these beliefs. Our education systems often refuse to teach children they assume will not learn. My own son was denied the chance to learn to read and write, not because he couldn’t, but because it was believed he couldn’t.

We don't need more categories that limit our children. We need more belief in what’s possible when we presume competence and demand the right support.

What upsets me is that so much time, language, energy, and effort is being spent trying to put our children into new boxes. All of that could be used to demand what we actually need from the world to care for our children, and to care for ourselves.

It’s baffling, honestly. I remember the time before autism was one combined diagnosis. I remember the confusion, the exclusion, the lack of access. And y’all don’t remember that? Lot of yall got children older than mine, yall remember.

Instead of carving out more ways to separate our kids, we should be fighting for more ways to support them. And each other. And ourselves

The comments I received on this post were mostly understanding. Some thanked me for opening their eyes to things they hadn’t thought of. Most got it. But those who didn’t, they got on my last damn nerve. Cause they kept putting things on me I either didn’t write nor feel. Way too many of them wanted me to prove my child was “profoundly autistic” or that my experience raising him was just as hard as theirs.

And that is when I started to lose it. Let’s head to the next post.

Post #2

But, for real.

I don’t know if it’s the sleep deprivation talking (I’ve gotten less than an hour of sleep in two days), but the whole “Do YOU know what it’s like to raise a child with severe autism?” thing, like I’m just out here shouting from a distance, is really pissing me off.

And I don’t even get mad like that. Not over internet stuff. Not cause i feel the internet isnt real, but usually, I can be like, “Girl, just log off, they don’t know you,” and move on. But this? This has me feeling a real, physical kind of anger.

Because I do know what this life is like. I live it.

And I still don’t believe that a label rooted in deficit and struggle is going to guarantee my child, or us, his family, the care and support we need.

It’s not that I don’t understand the reality.

It’s that I don’t agree with the “solution.”

And you know what really got me? I caught myself laying out my life like a résumé, listing all the reasons why I’m “qualified” to speak on this.

Because some folks can’t imagine that someone living a life like theirs might disagree with this label.

I put it all in a comment. Felt a little broken after writing it.

I’m not taking it down, because there’s some good stuff in it. But I might edit it.

Because if I have to talk about all the trauma my son has endured…

If I have to drag out our deepest wounds just to prove I’m “worthy” of speaking on this…

Then I definitely don’t want that label on my child.

And if I have to frame my son in that kind of pain just to justify placing him in a separate category within a diagnosis he already has…

Then something is really, really wrong with what we’re calling a solution.

I really fucking did write that comment that legitimized their fucking struggle litmus test. And regretted it immediately after I shared it. I didn’t share anything my family hasn’t already agreed to share or was outside of any posts I have shared in the past, but it was how I was sharing that information that broke my heart. Because I made our existence hardship based. We looked like trauma line after line after line. And that is EXACTLY what they want Profound Autism to be. And that comment, lit my ass on fire.

Post #3:

I’m just working through some thoughts.

Because I am sitting here, a Black woman, child of the civil rights movement, descendant of the enslaved, living in a world that has always labeled us as less than. Labeled us as threats. Labeled us as incapable. Labeled us as disabled. They put behaviors on us, question our intelligence, judge our worth before we ever open our mouths. This skin we are in informs my life and experience just as much as autism does.

And when you’re Black, disabled, or multiply marginalized, labels aren’t just descriptors, they’re damn decisions. About what you're worth. About whether you're safe. About whether you're even seen as fully human.

Cops hopped out of a car with weapons drawn seconds after meeting my child.

Seconds.

That wasn’t about his behavior. That was about his Blackness. That was about the story the world already wrote on his body before he could speak a word. A white woman chased a Black autistic child into a park while screaming racial slurs, and somehow she raised hundreds of thousands of dollars. For being racist. For being ableist. There is no grace for us, even when we are children.

And now they want us to add another label to our children, profound autism. As if that word will finally unlock the care we’ve been begging for. As if that word won’t come with the same consequences all the others have. I don’t believe that a label rooted in struggle and deficit will guarantee more support for my child. Because I’ve lived the reality of what happens when the world sees you only as a list of deficits.

If I have to talk about my son’s hardest moments, if I have to retraumatize myself just to be “allowed” to join this conversation, I want no part of that label. If I have to lay out all the pain we’ve endured, just to prove I’m “qualified” to have an opinion, I want no part of that label. And if I have to feed my child to a system that needs him to suffer loudly to be seen, I want no part of that either.

Because no, this isn’t just semantics. This is survival.

I want support for my child. I want systems to care for him, resource him, protect him. I want them to care for us as his family. But I am not willing to help build the case for why they should give up on him before they ever try. I am not willing to co-sign a label that will be used to justify why they refuse to teach him, accommodate him, communicate with him, believe in him.

I know what that kind of label does. I’ve seen it before. I’ve lived it.

And I won’t let them do it to my son.

This was supposed to be my last post on this, for the week, at least. I’m running on no sleep, and honestly? I’m just tired. Tired of repeating myself. Tired of explaining things to people who aren’t listening, who are being argumentative just to be argumentative.

But nope. Someone read a post where I detailed the history of how disability labels have been weaponized against Black bodies, to justify our punishment, our exclusion, our death, and decided we “don’t have it that bad.” Someone else read that my children were nearly shot within seconds of interacting with law enforcement, and still found a way to say, “It’s not as bad as what we’re going through.”

And then came the demand: prove your scars. Oh, and let’s ask your parents how hard you were to raise.

They’d tell you it was hard. I was in ABA therapy. But they’d also tell you that raising my son, navigating his needs in a world that doesn’t see his full humanity, has been even more complicated, more delicate. That’s the relationship we’re talking about here: me and my son. Not me and my parents.

And of course, someone had to say that just because I’m articulate doesn’t mean I “really know what it’s like.”

No, it means I do know what it’s like. And I can name exactly why I feel the way I do. Don’t twist my ability to form a sentence as a reason to dismiss my experience. That’s not just odd behavior, it’s rooted in racism, too.

Post #4

It’s been some time since someone used “articulation” as a means to tear down what I’m saying.

I usually get people who think I use “be” too much and start a lot of sentences with the word “like.”

Meh, don’t care.

But today, yeah, that one was just as ridiculous as the ones that make it appear as if I’m unintelligent. Cause this one intimated that I was too smart.

I struggled talking as a child. My grandma was the one who taught me to write.

And writing is how I make sense of the world.

It is how I survive the day.

It is where my advocacy hangs.

And it is how I honor my grandma.

No one is gonna make me feel bad because I worked hard at being able to form my thoughts so I can connect with others.

I worked damn hard to be here.

I was in years of therapy to be here.

Speaking of my advocacy, it is rooted in the experiences of those with the highest support needs. I am the parent of a Black autistic child with level 3 support needs and an ID label. You don’t have to ask me to step into those shoes; I live in them every single day.

What I will not do is accept that the only path to support is through labeling our children in ways that dehumanize them. That’s the point I’ve been making, and I stand by it. That’s all ya gonna hear from me.

I don’t want a world where my child is only seen as worthy of care if he’s labeled by his deficits. That’s not equity. That’s conditional humanity.

I’m speaking from a reality where these labels can be life-threatening, especially for Black children. Where labels don’t guarantee support, they’re often used to deny it. Profound Autism doesn’t guarantee support and that’s what I am saying.

If that makes you uncomfortable, I encourage you to sit with it. But don’t mistake my refusal to accept harmful systems for hate. That is love, for my child and for all children like him, that pushes me to imagine better.

My imagination is the best thing about me. And it makes for some fire advocacy.

You can be mad, but go be mad over there, somewhere, cause you in my way.

By the time I finished this one, I was dog tired. And I think I started to find that anger that was missing when I read the post that kicked all of this off.

Now, that I am properly mad. I am going go harder than I have before. I am telling them that their children deserve more than labels designed to limit and will be used to justify seclusion, institutionalization, harm, and denial of services, accommodations, etc. We BEEN there before, why are we trying to go back? And some are racing to the front with their hands up screaming about how much their struggles are and that a label is going to magically erase that.

Alright, that is it for this week’s Social Stories. I don’t know if these will happen weekly, I don’t know if I will have posts that will linger long after I have shared them weekly. But we shall see.