My Case against "Profound Autism"

...have we considered that we LOSE when we refer to our children as THEY see our children?

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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

I’m gonna break this down one more time (the other times was on social media, and maybe once here). 

I’m not against supports and resources that address the very unique needs of those like my son. 

I ain’t unfamiliar with presenting perspectives that many would find to be obstacles to their causes. I know what it’s like to go against voices that are strong, be it in size, popularity, or how loud they are. 

I don’t set out to be anyone’s enemy but the way the battle lines are drawn within this community will have someone simply sharing their lives experiences can land you on the opposite of someone’s cannon.

So be it, then. 

Let’s do this. 

When I first started to share about not liking “profound autism” to describe my son, I never thought that I would be something that I would continue to address. I wasn’t going to. A few years ago, I shared my first thoughts on it. And I thought I would be done with it. Fast forward to today, and the time that has passed have been filled with remarks and treatment of my son that have been foundational within “profound autism” and it has been less than beneficial. In other words, I was okay with someone being okay with defining the entirety of their child’s existence as struggle and hardship. Do you, you know? But it became a problem when those thoughts and subsequently, the actions because of those beliefs, began to touch my son. 

And I never should have let it get that far in the first place. I ain’t saying I would have had the power to stop this label from catching on, but I would have felt a lot better had I not just brushed it off as something as simple as being confined to individual family homes. This matter of preference and little more. 

This was a mistake, and I should have known. Because I actually watched organizations and large parent accounts advocating for the addition of “profound autism” into the DSM. I have seen the calls for the separation of “profound autism” from autism in general. 

They are boots to ground in this and I watched them grow into something that finally hit my door. 

So, when someone yesterday told me that because of the posts I made about not sitting well with profound autism and listing my reasons why, attempted to put my concerns into a box they themselves labeled as a nuisance or something that was minor, or insignificant given that “Black and Brown kids are facing so much right now,” I blocked the fuck out of them. 

Because this isn’t as insignificant as I once thought it was, and I wasn’t about to be told by someone hellbent on quieting our experience that we did not matter.

Let me tell you about as much as I am going to share about my son and his autism. He was diagnosed before levels were a thing, and if he were designated a level, he would be a 3, requiring substantial support in every area. He is nonspeaking, carries a diagnosis of intellectual disability (that I disagree with), and has severe motor control challenges. There is not a moment that he can be left alone.

That’s it. That’s all I am going to give you. From what I have shared here and other shares in the past, he would be what many would refer to as “severe,” “low functioning,” and “profoundly autistic.”

I ain’t unfamiliar with the struggles that families like ours deal with on a day to day basis. The way that people attempt to divorce me from my own life needs to be studied. To distance myself from my own experience is diabolical work. They do this because they cannot fathom that someone who parents a child like theirs, with a platform like mine, talent like mine, advocacy like mine would stand in the way of them referring to their child as little more than the struggles they have. They have made me the enemy to their movement. So, if I cannot fall in line, then they must tell me and others who would lend me their attention, that I simply “do not know what it is like.” They will tell me I don’t know their lives. A few even blamed being “late diagnosed” as part of the reason I don’t subscribe to deficit based labels.

Interesting.

I was diagnosed years before children. Spent years in ABA therapy. Informally diagnosed as a preteen. Formally diagnosed at age 18. What is late anyway? What age constitutes late? I feel like my diagnosis later than it should have been, but many years/decades earlier than many of your favorite advocates. My youngest was diagnosed at age 6. This is 3 years later than I would have liked, given that I started the process at that age. I feel like his diagnosis was late.

Shares for another day. Categorizing me as “late diagnosed” is another way to put space between me and what we go through. They aren’t effective with keeping me from telling my story, but they will try to discredit me, making claims that I am not like the is a new tactic, and I don’t think they will let this one go. It’ll stick for a bit.

My issue with Profound Autism

Humans like to label things because we have a thing with categorization. When there are too many things, we like to sort them, put them into designated spots because we think that we can understand them better, or we can give them the attention that each requires. But we don’t actually understand each other better or give these categories the respect and attention they deserve.

Labels are descriptive but they can also be prescriptive. This means that not only are they used to describe and define someone, they can also be used to inform another how to treat whoever carries this label.

If all you know of my child is struggle, how likely are you to see him whole? How likely are you to be able to presume competence? Would you try to find out his interests? Would you think he even had interests? Do you feel he would like friends? Or someone to sit with him and talk? Would you accept that he had a life outside of the hardships he faces?

People do not see my child if all they know of him is that he lives a life of struggle.

Profound Autism is frustrating because it is so limiting and reductive. Do you know how many times people will lock my child into this narrative of deficits, and then will erase his humanity. And it is not just individual people that will mistreat my son, but individual people matter, because they build these systems that will only “manage” my son’s struggles and disregard nurturing who he is.

Speaking of these systems, lets dive a little into how labels like “profound autism” will harm my son more than hurt him:

• Education: My son’s IEP while he was in school did not foster his strengths or nurture his whole body and mind. What they did was segregate him with very little interaction with other students. There was a large emphasis on controlling behavior and not understanding why a behavior was occurring in the first place. He was not taught as the other students were. He didn’t attend programs with other students. No assemblies, very little field trips. They limited his opportunities to learn. And to express himself.

• Medical & Healthcare: There are so many times that we take our son to the doctor or a hospital for an emergency and the medical providers will look at our concerns as something coming from exasperated parents who want a convenient child, because they would require convenient patients. They would see our child as a burden, even when we never describe him as such. They labeled him as deficient. So, they treat him as such. And when they view him as inconvenient, a burden, hard to care for, they will overprescribe medication, ignore his pain, don’t give a damn about his autonomy.

• Employment & Economic Barriers: My child is not capable of working right now, but I did used to work and I have done so many workshops with employers and I will tell you what I have learned from that experience, my work experience, and the stories I have collected from other individuals and families. Employers often want to fix behaviors that they would find problematic to the job production and efficiency. They could be creating inclusive workspaces where people with disabilities can thrives, but most do not. Also, the assumption that someone cannot produce or produce well leads to fewer opportunities.

• Legal & Justice: This is something I am going through right now (and I will discuss it a little later in this post). If we as a society continues to dehumanize disabled people, this makes it so much easier for it to justify stripping the disabled of their rights. You can have so many abusive guardianship arrangements, horrible representation, and so many disabled people are harmed in institutions and many get away with it because we have grown desensitized to the pain and abuse that disabled people face.

• Community & Social Life: This is the first thing you notice when someone has a label of defect following them around, hanging over them like a dark cloud. If you only see my child as what he cannot do, then people are less likely to include us in their spaces. This isolates our families. And so many of our families feel this isolation hard. Profound autism doesn’t fix this, it enhances it.

I cannot accept a label of deficiency for my son. It is not fair to him. And it is a lie. Because my son is so much more than pain and struggle and strife. I am committed to fighting against labels that are reductive and do more harm than good.

Why do families like mine advocate for labels of struggle?

I know why these families cling to “severe,” “low-functioning,” and “profound autism.” I know what they go through. I live through the same thing. I know the isolation, limited resources and services, lack of respite, lack of care…

I know it all.

And because I know what they go through, I understand why they hold so tightly to labels of struggle. They have this desire to separate themselves and their loved ones from a community that behaves as if it cannot comprehend what it is that impacts their lives.

Honestly, they don’t.

This is why it’s such an easy choice to want to distance themselves. The part of the autism community that does not understand nonspeaking autism, or those with severe motor deficits, or who would be considered “support level three”, is large. And it’s truly unfortunate given that roughly 30 percent of those diagnosed with autism would fall into either one of those categories. I am perplexed as to why this sizable chunk of the community is often lost and forgotten about.

I often do not connect with the stories of this community. And I know many families like ours do not either. I do feel that those who need less support, those like me, have dominated the conversation, drowning out the needs of my own family. I definitely see this. I won’t disagree with those who tell me that they feel unheard. I feel the same as well.

They feel that providing this separation between persons who need less support from those who need more, will suddenly open more access to their child. It will make resources more readily available. It will all more room for their stories to breathe.

Thing is, it will do what the other labels of struggle did: make life exponentially more difficult for our families. Lives centered in hardship only provide solutions that see those who struggle as obstacles and unworthy of actually accessing this world. They see them as something that needs to be fixed and/or treated, and many families would welcome a treatment or fix or cure…but it doesn’t quite look like this. What this society will do is remove what little supports they do have, what little access they do have, and reroute those funds, resources, and support to areas they feel would be best able to appreciate and take advantage of them.

Society as a whole doesn’t look at someone who struggles immensely and go, “oh, looks like they really need all this help and accommodations, let me help them get that.” No, what they do is, “they aren’t actually going to benefit from all of this help and support, so why don’t we just do the minimum to keep them alive, the occasional visit outside, and put them somewhere the rest of us don’t have to be burdened with their presence.” They do not see our children whole. They see them as human shells made up of broken pieces.

Every time we center our children in struggle, it makes it easier for them to remove support, not add it.

My desire to use more words.

Someone sent me something that isn’t unlike what I have read and heard in the past. Challenges to my perspectives carry patterns. If you have been at this for as long as I have, you can spot most of them. It’s rare that something presents itself as new, and I am honestly saddened by that because this playbook has become stale.

We are now in the phase where many will attempt to divorce myself or my son from our experiences.

Recently, someone felt as though I were late diagnosed and because of this assumption, categorized me as part of the problem keeping those with “profound” children from accessing what it was that they need and require.

This recent message contained the thoughts of a few and were not unfamiliar to me as I have heard them many times over the years:

if her son were truly like ours, she wouldn’t feel the way she does and share the crap she does

See, they can’t actually attack the heart of my argument cause honestly what rests in opposition to not wanting to call your child “profound,” “severe,” or “low functioning”?

It’s being OKAY with calling them “profound, “severe,” or “low functioning”.

And to avoid admitting anything close to that, they will attempt to invalidate our experiences.

Now, I must be “late dx’d.” I mustn’t be autistic at all. My son isn’t actually like theirs. His challenges aren’t as hard as theirs. And on and on.

Because if you can separate us from own lives, you can discredit us. It’s easier for you to be like “she ain’t like us, so what does she know.” “Her son isn’t as ‘profound’ as mine, what does she know.”

I made several decisions a long time ago when I started to bring my offline advocacy, online:

1. Family affair. They have to know what is shared and we make arrangements to ensure that we are okay with what is being shared.

2. I’m not sharing in an academic way. No symptoms, no lists, no charts.

3. I’m not writing easily digestible content. Lives shouldn’t be chopped into bite sized chunks. They shouldn’t go down with ease. Swallow whole. Do not crush or chew.

4. We are not broken; I will not write as if we are.

5. I will not curate a life of struggle in the hopes to connect with another’s trauma. We will not be rooted in pain together here.

My children don’t “seem” like theirs because I don’t share my children as they choose to share theirs.

You will know of some of their struggles, but you will not know of all of them. You will never know exactly how autism works within them. You know one speaks and the other doesn’t. You know that one uses the wheelchair. The other doesn’t. One is learning to spell and get a better handle on his proloquo2go, the other is trying to figure out conversations with his peers.

Outside of this, how much do you really know of exactly what autism *is* for them?

I share more about their loves, joys, personalities, interests.

I talk more about how the world sees them, and how it will treat them.

But you don’t get “this is the real autism” posts from me.

I am not in denial about my son’s autism. What I know, is that the world—this wretched, small-minded world—will never see him for the beautiful, radiant soul he is, if all they ever see is a body weighed down with struggle. They will label him, reduce him to a mere sum of burdens, and they will fail him.

People can be cruel, can't they? They can be cold, indifferent, brutal in their ignorance. Yet, in that same heartless world, there exists the possibility of redemption. There exists the choice to rise above the narrowness of one’s own vision, to TRULY see. It is in that space, where understanding is born—not from serving others platefuls of hardship, but from offering them the full, complicated, precious human experience—that transformation can begin.

I speak in a language rich with nuance, with the fullness of experience, because understanding does not dwell in the shallow waters of labels born from deficit. These labels, they stick to us like a poison, doing more harm than good. We are living through a time when our government, with cold efficiency, seeks to strip away the fragile rights and accommodations that disabled people have fought so hard to gain—and there are those who cheer them on. They cheer because they cannot fathom a disabled life as one worthy of inclusion. They cannot see it as a life that holds value, that can contribute to the collective good. They cannot see it as a life filled with humanity.

And so, they are content to slice away at the little support that remains, gutting every measure that would allow disabled people to move through this world as they do, to live lives rich with love, compassion, connection, beauty.

You do not have to like me. You do not have to agree with my thoughts on the word “profound” as it pertains to my son. But you cannot, in good conscience, create a divide between him and his diagnosis simply because you cannot look beyond the narrow confines of your own limited experience.

I am well aware of the challenges my son has. I know this. I feel it. I see it every single day. I know that I will have to walk into doctor offices over the next few weeks and have to talk about how well my son functions. I know the language I have had to carry about my child when trying to get what little resources are out there. My tongue is split. Dancing between weaving narratives of struggle to obtain services and wanting the world to see his whole, beautiful self. I don’t need someone to tell me that I need to “play the game.” Not me, not this southern Black American disabled woman that she needs to play the game. A game we have been playing since before I was born. A game I was taught when I was so very young. This game I won’t ever win.

And because I know my chances at winning are nonexistent, I am wanting to try something new. I want out of this game. So, I do my very best to inject large doses of our story and our unique intersections. I want the world to know every layer of who we are. I want to connect our story with others. I don’t want them to see us as struggle, but as a human who knows struggle because to know struggle is remarkably human.

I will still dance. I will still move in and out of poor vocabulary and mindsets born of tragedy and challenge. I will still play their game.

But I will also find pockets in which I fight back. Because no parent should ever have to define their child as deficient to receive help.

Ever.

Next post…

It took me some time to even write this post because I have been going through something I do not have the emotional capacity for: guardianship. This has been an exhausting process, and we haven’t even officially started just yet. Given the amount of families, I have talked with who either do not know the process, are about to face the process with no guidance, or just have some untrue thoughts about it, I figured I am going to share this part of our journey. As best I can.

My mama heart is breaking over here and I need something that will help me to ease the pain. Hugs from the family do well. But helping others in the way that I hadn’t really received, will help more. My community did come through in ways I never even though was possible to help me with this. I will write about it in the next post. This one is long enough.

Funny how they tell me I don’t know about their lives and I am undergoing a legal process that only persons with children like theirs would go through. Smh.

Til next time, Taters.