We're Not There Yet

Feb 19, 2020

It's amazing how much progress we've made in improving outcomes for communicators with complex needs. I look at ten years ago vs. now and see the beginnings of a promising mindshift by therapists, families, and even the general population. The movement towards evidence-based practice has been significant and powerful, and has helped standardize implementations around the country.

Some people are beginning to take the next step and say, now that we have all this data and all these best practices and researched strategies, it's a good time to look back at previous policies or initiatives and see which are no longer appropriate or necessary. This is a healthy discussion to have on an ongoing basis.

However, one argument I hear that I don't think we should support is the idea that we no longer need to advocate for "presumed competence" (the term "presume competence", to my understanding, was an effort to remind people that just because we don't have evidence doesn't mean someone isn't "in there", and in fact, we should start from a presumption that they have full mental capacities and could function fully if the right supports were found).

In a world of data and evidence-based practice, the argument goes, we no longer need to make any presumptions, we can let the data speak for itself. Additionally, the term "presume competence" has historical baggage from its association with Facilitated Communication, and so can't be used without implicitly endorsing that methodology.

Setting aside the debate around terminology (I actually don't care what we call it, I'm not a purist. My circles seem to be converging on "presume potential" as a replacement, so I will use that here), I don't feel comfortable saying that we no longer need to start from a place of presumption. I don't think we're to that point. I should also note that for me, the concern is personal.

The Glasses Are Not Rose-Colored

First, from my travels around the country, I am very comfortable saying there is still a pervasive premise of incapacity. We are generally a "show me" country, to our detriment. There are pillars of progress where this is less of an issue, but we have whole counties still on PECS-before-apps or other proof-first approaches. Even where the speech therapist is bought into the idea of "let's not assume limitations" (which is far from 100%), the teaching staff and aides and families who support communicators are by and large not to that point. Someone told them their child is at an 18-month-old capacity or that their receptive language is 4 years behind, and all they heard was "18-month-old" or "4 years behind" and, hello glass ceiling. Why?

It's actually impossible not to have a presumption. When someone says "he has Angelman" or "she uses eye gaze" your mind jumps back to the last time you worked with someone like that, historical inaccuracies and all. The human mind can't help but pattern match, and then clarify as it gets more information. You have to start from somewhere. You can rail against that presumption, you can accept it, you can carry it as gently as possible, but it's there. When you hear people talk about discovering that people with autism "are actually in there", it's the "actually" part that should draw the most concern. It's saying, "contrary to your premise".

I would argue that most of us grew up with a premise of "disabled people are basically babies or small children". You can see it in the affectionate smiles, simplified language, lack of grade-level IEP goals, complaints around "pointless stimming", focus on request-based vocabulary, etc. People use this high-pitched not-quite-baby-talk-but-you-get-the-idea tone with my daughter that I'm sure she's tired of. I don't know how the next generation will adjust, I hope it can start from somewhere better, but in the mean time there is still value in advocating for "change your premise". That's what "presume potential" is arguing, that your generational premise is wrong. And for as long as the pervading sentiment is to presume incapacity, we need to be challenging that.

I don't actually care what we call it, but we need to be challenging that. Why we ever started with this idea that people with disabilities are just beautiful souls and anything they accomplish is a pleasant surprise, is another topic. It's at least partly a protective measure, an argument of convenience. But it hasn't gone away yet.

The Alternative Is Not Innocent

Second, I think the dangers of presuming too much are being overstated. There is a risk of aiming too high, resulting in abandonment. For some families you may only get one shot before they give up supporting you. But I don't actually think presuming potential means "starting as high as possible". If "presume competence" means "assume they can do it all immediately" then yeah, let's not do that. If people are using "presume competence" to set unrealistic goals, then the team needs to talk through that. But remember that "unrealistic" is a hard thing to tack down. Nobody thought my daughter could do anything beyond basic choice-making, and it wasn't until one of her teachers joined us is stretching way beyond her measure capacity that she launched ahead into literacy, comparing two-digit numbers, critical analysis, etc. Current capacity is often a moving target anyway.

Maybe changing to a new term like "presume potential" is healthy, and can remind us of where we should be shooting for eventually. It's more of a "we're not stopping here, folks", which I like. As long as everyone understands that, we can tolerate some stumbles along the way.

I have definitely seen the knee-jerk, "Rett Syndrome? Get them a Tobii with eye gaze". Some argue that this reaction is evidence against presuming potential. I'm not actually sure what an over-marketed product has to do with believing in an untapped potential in a communicator. But we do need to make sure that our starting point gives us a path to progress. Starting with the "wrong" system can set us back, but saying, "there's no reason to believe he could ever use that advanced of a system" is not presumption-less, it's just a gyrated way of presuming incompetence. Our bias is showing, and we probably didn't even notice.

I don't believe this was the intent of the people who started advocating for a rethink, and I also don't think that not presuming capacity is equal to presuming incapacity. But there are communication supporters, overworked and overwhelmed, who are relieved to have the excuse to step back and wait for evidence before they put in the effort to up their game. Or to use this new argument as justification to not bother with a robust AAC system and just stick with the way they used to do things (irony abounds).

Remember, the only way to presume nothing is to wait for evidence. For the communicators I have worked with, the waiting part is just too long. Are you going to start him on one big button and wait for him to use it before adding another, on and on? This is not presumption-less. What level are you going to start at while you're waiting? That is a presumption. If we waited until we had confidence we'd found the right answer, we'd be waiting years sometimes. What happens in the mean time? Presuming potential means that, in the absence of evidence, we are going to start from a premise of capacity. It's not a binary, either presume competence or limit communicators, but in the role of gatekeeper, we need to be very cognizant of the fact that waiting for data means, literally, "I'll wait until you prove it to me". I'm more concerned with what kind of presumption you are making in the mean time.

The Data Is Suspect

Finally, even if we can collect data quickly, we should be very cautious about our data-driven conclusions. Anyone who studied statistics and reads the research on our AAC best practices should immediately be thinking, "small sample size." We should be cautious about our assertions. AAC interventions are an exercise in individualization, and even when we have good data, it's not always going to match up. We spent years with failure-level results on IEP goals that my wife just tossed in the trash – not because our daughter couldn't meet the goals, but because we hadn't yet figured out an assessment strategy that worked for her. There are too many factors. Different environments, times of day, communication partners, anxiety, physical discomfort, hunger, fatigue. We call them complex communicators for a reason.

Please don't misunderstand, I am an advocate for evidence-based practice. We do the best with the data we have, and some data is better than no data. But when there's a mismatch, we need to admit that we're not in a position to be all that dogmatic. We need to be driven by both the data, and the cooperation of everyone involved. Personally, I would feel really insecure ever saying "she can't" or "he won't ever" when it comes to communication, even if the data were explicit.

When you introduce AAC you have to start from somewhere, you have to pick a premise. You can run some preliminary assessments and get a feel for grid size, breadth of vocabulary, etc. But let's be real, the SLP isn't present often enough, or in enough different settings, to really be confident that they've got it right from the get-go. In other words, you collect data, but suspiciously. We use the data we have, we follow the best practices that seem to be working, but I, at least, am very uncomfortable saying we've reached the point where we can make our decisions based exclusively on research and data. Honestly, we'll probably never be able to, and that's ok.

Wrapping Up

I think it's great to keep having these conversations. I worry that sometimes the arguments have unintended side effects, and we need to be careful about that. We're not free of the baggage that necessitated presumption advocacy in the first place. But double-checking that we are being responsible and deliberate in our intervention strategies is healthy and important. We, none of us, probably do it quite often enough.

I do believe that, in general, we should start with the assumption that a communicator can grow to the point where they will need access to a broad, robust range of vocabulary. Planning and advocating with that end in mind is useful, but it's also empowering and better than the alternatives. Personally, I don't have confidence that my daughter Becca, with inconsistent responses and long acclimation process, will be fairly served by an evidence-first approach. We use evidence as one tool in our kit, but often our presumptions are an even more powerful driver for success.

It's hard for me to apologize for believing that I shouldn't under-estimate how far a communicator is going to get. Presuming potential is saying, "there's no reason not to believe they can't get there". It's a deliberate bias. And with the constantly-shifting landscape of our understanding of disability, it's hard for me to argue anything else.

Brian Whitmer

CoughDrop Founder