ASD and Expectations

“Nonverbal”

“Low functioning”

‘Negative behavior”

“Severely intellectually delayed”

“Significantly below grade level”

“Unable to focus”

“Does not relate to or cooperate with teachers or peers”

Feels pretty icky to read that, huh? For any of you who have sat through an annual IEP, progress report, or private evaluation, it’s no surprise to hear terms and phrases like these as commonplace: I used to use many of them myself in describing my “findings” in evaluations. Of course, ideally, the point of these terms isn’t to be discouraging: they are meant to describe which areas need support so that appropriate goals and interventions can be implemented. How can help be offered if the areas of need aren't identified, right?

I and many other professionals were trained to use this kind of verbiage for this purpose, and most of us (if I can speak generally, here!) do and have done so with the sincere hope of helping the kids and clients we work with. But there’s a flaw in the system here, folks, and pretty major one: these “descriptive terms” are not purely objective. They carry a significant connotation that affects the assumptions about what and how much kids are capable of. The message? “Your loved one’s level of language/intellect/learning capability means we have to lower our expectations”.

We’ve all heard the idea of a self-fulfilling prophecy, and I don’t know if there’s a better example than the scenarios that those with ASD and their families face. The diagnosis of Autism is often accompanied by a description of the perceived severity ("low functioning" or "high functioning, "severe, moderate, mild", etc.), which drives the goals that are ultimately written for our kids, teens, and adults. These goals typically focus on extremely basic concepts (ABC’s, anyone?). When students ultimately miss the requisite success rate to “pass”, the assumption is that they don’t understand, and that goals must be continued or further adjusted downward. I’ve seen clients come through with goals like these for YEARS in a row with little or no progress documented, with the underlying assumption that this is a reflection of the student's inability to learn beyond a certain level.

This pattern was beyond frustrating to me and the families I worked with: something had to give. Over the past two years, I’ve had some major lessons in the idea of presuming competence: basically, EVERY student has ability, and only needs the right support to develop and showcase it. Before I changed anything else in the way I supported my students with ASD, I made a fundamental shift in how I talked to and with them. And you know what? The entire feel of our sessions together changed: kids who had eye contact goals for years were suddenly looking at me, students who seemed angry to be anywhere near the therapy room began walking in with a smile, and kiddos who had never initiated any interaction before started reaching out. All because I let go of the beliefs behind the labels, and started believing whole-heartedly in my kids.

So what does this mean, if you and I should ever have a discussion on Autism? Well, instead of “nonverbal”, you’ll hear nonspeaking; instead of “disengaged”, you’ll hear dysregulated; and instead of “distracted stimming”, you’ll hear sensory regulation.

If you should ever see one of our sessions, when a student is struggling to complete a skill, I will assume it is due to my lack in giving the right support, and not a lack of ability on my student’s part. I will speak to my students in a way that acknowledges and respects their intelligence. And last but not least, I will challenge them and support them, and I will hold my expectations high, because I know they will always exceed them.