April brings many great things; spring, pretty flowers, picnic weather, Autism Awareness/Acceptance Month (AA/AM). But it can also bring with it some ugliness, allergies, Aries season (I kid)…and Autism Awareness/Acceptance Month. I know you’re probably wondering why I have AA/AM listed as both good and bad, but like many things, there’s pros…there’s cons. This post is about the latter.
For the most part, I enjoy Autism Awareness Month, but lately it has turned into a 30-day war with endless battles over symbols, colors, identification, labels, etc. and honestly, I’m over it. Seriously. Nothing good comes from the back and forth. All sides aren’t right, nor are they wrong. This explains why no “side” ever “wins.” Round and round in circles they go, and all they have to show for it is anger and resentment. It’s disheartening.
There’s so many “battles” to discuss and I could do a piece on every single one of them but I decided I wanted to focus on just one: functioning labels. I made a previous post about the good and bad about labels, I generally only use them in certain situations (i.e. clinical and educational settings). There’s this push for the abolishment of labels altogether, and while I can see the argument here, it’s what comes with it that gives me pause…the vilification of parents of those with “severe” Autism (it honestly goes both ways).
The anger and hate towards the parent of the child severely impacted by Autism is tragic. “Comorbid conditions is not Autism!” They’re right, they are not. I go more into this in this post. So while they make a point there, they negate other aspects of the issue altogether. There are individuals with Autism who do not have co-occurring (though I would argue that a large number of them do) and yet they are still severely impacted by Autism.
This post isn’t about the actual “label” but rather how we should acknowledge that there is no uniformity in the way that Autism affects those who have it and that it’s not wrong to make note of it.
The fight for neurodiversity and acceptance is a good cause, but I think in its efforts, we are neglecting the fact that there are indeed “levels” to this. We want to yell from rooftops that “Autism is a spectrum,” and “no two are affected the same,” “you meet one child with Autism,” you know the rest…but we don’t actually mean that, do we?
We have a difficult time realizing that by referring to individuals as “high support” or “low support” we are indeed implying that Autism impacts those who have it (or are Autistic) differently. High support individuals with communication and social interaction deficits that are so profound that they affect every domain of their lives, result in extremely difficult and challenging behaviors.
These new and currently acceptable terms, “high- and low- support are indicative of levels and also…labels. It’s not that I am against these new terms and what they stand for (I no longer prefer the term “low-functioning” or anything with “functioning” anymore), it’s that embracing the acceptance movement often means neglecting a subset of this population that is in desperate need of understanding and support. It’s almost as if in this movement Autism is no longer a disability.
I want the world to accept my children as they are, but Autism is most definitely a disability, psychopathological disorder, etc. I don’t love them any less because of it. If anything, I love them more. But in this movement, I often feel it’s often all or nothing here. If you state you are struggling with your child, mention they are “severe,” etc. then this means “you do not love your child,” “you’re a supporter of eugenics,” and “you do not accept them as they are.”
Humans are more complicated than this and it’s appalling that a population such as this one would be so willing to place others in boxes because we are unwilling to understand where they are coming from. We’re so fixated on the “label” that we don’t completely miss the cries for help. Or we simply ignore them.
If the ultimate goal is to bring them into the fold of acceptance and “celebration,” we are doing it wrong. Insulting them won’t bring them closer, attacking their parenting won’t either. And you damn sure know touchin’ on the love they have for their children will never get you anywhere. Ever.
Wouldn’t it be something if a movement about acceptance would acknowledge and accept that some individuals with Autism are more impacted by the disorder than others? Simply mentioning “support” levels is not enough. I have seen people continually mention “high” and “low” support and then turn around and bite someone’s head off for mentioning “severe,” all the while claiming “labels are bad.”
Seriously, both sides while using differing terminology are saying the same thing, while possessing an inability to bring themselves to accept the existence of a spectrum that ranges from “mild” to “severe.” Like, “whet”? Seriously.
Now what are we going to do to help all those with children on every part of the spectrum? It begins with understanding. I may not agree with the term “low-functioning” anymore but I will not let that define my response to a call for help. I’ll talk about why I feel a certain way about terminology here on this blog, or my facebook, but most often I choose not to.
I have found that lecturing others do not work that well. I often opt to give my assistance as much as possible to whatever issue it is that that are having. I make their problem my problem and we go at it. And through that process, they grow just as I grow and they, more times than not, arrive at a change in perspective organically with no prompting or shaming on my part.
These parents are overwhelmed and frustrated, sad and scared. You don’t help them by telling them they are failing as a parent because they used a functioning label. You help them to see past their child’s behaviors because right now that is all that is dominating their child’s (and their) lives right now. It’s hard to get someone to see that Autism is more a communicative and social-relational disorder more than anything if they are getting their heads knocked about by their 12-year-old.
It’s hard to push neurodiversity and acceptance to a parent whose child is wearing soft-shell helmet because he hits his head so hard it bleeds and he knocks out his hair.
Change your approach. Adjust your lens. Don’t look at Autism through the scope of your individual experience. Try to look at it from theirs.
We have to #HealTheDivide.