Over the past few years I’ve written about presuming competence as I have come to understand it, ‘here,’ ‘here,’ ‘here,’ and ‘here‘. Over the years my definition continues to shift or, perhaps more accurately I should say, my ability to practice presuming competence continues to shift. I still grapple with whether I am going far enough when I presume competence, though the simplest definition, is also the best one, which is that we presume all human beings are capable of learning if given the right supports and accommodations. But many want to know what that means for a specific person they know or are working with. What are those supports and accommodations?
There are a couple of universal things I have found extremely helpful. (I’m hoping others will add what they’ve found universally helpful as well as specifics that may be particular to just one or two.) The first is being respectful of the person and speaking to them as one would speak to any human being regardless of whether they use spoken language or not. It may take some getting used to, because unlike someone who uses spoken language easily, you may not get a spoken reply, or you may get a spoken response that you cannot make sense of. Either way, I have found, speaking to my daughter (and I’m now talking about before we knew all that she knows and before she was typing with us) as I would any person her age, was critical. Explaining to her what was going on, what was going to happen next, what we would do if something we expected to happen didn’t, and including her in any and all conversations that were taking place in her presence, has been key.
In situations where a meeting is occurring, as might happen during an IEP meeting at school or with a team of therapists or with a doctor and nurse, I have found the single best thing I can do is include her in the conversation. (I have made many mistakes over the years, so please do not interpret this as my suggesting I do all of this perfectly without ever stumbling along the way.) So, for example, when we arrive at the place we are having the meeting, I will speak to her as I would anyone her age. I will ask if she’s comfortable in a particular chair or if she’d prefer sitting in a different one, perhaps away from direct light, or one that might have a cushion. Today I always sit to her right so that I can hold her keyboard for her as she types. I make sure she knows why we are all gathered.
If others begin to speak about her (as they almost always do and will) I will then politely remind them that she is right here and has no issues with her hearing. Emma wrote during one such meeting, “My hearing is excellent.” These days I hold the keyboard for her to write questions she may have or to add whatever she might like. As Emma now types with us daily and is more used to this, she will often initiate a question or comment without me asking her if she wants to add something. But in the past, if the people at the meeting continued to speak about her as though she weren’t present or seemed completely confused by my insistence on including her, (which many undoubtedly will) I might then say something about how hurtful and disrespectful it is to be spoken of in this way and that I’d appreciate it if they would rephrase their language.
If the talk becomes an endless list of deficits I would ask them to identify her many talents and assets and point out that constant criticism is unhelpful and destroys self-confidence and self-esteem. If they are silent (as has happened to us in the past) and seem incapable of naming any assets, I would give them a few opportunities to learn and do better, but at a certain point, professionals should be held accountable for what they are doing and how they are behaving. If after several opportunities, they continue to disregard my daughter and seem incapable of treating her with respect and seem convinced that she cannot understand, they do not deserve to be paid for their “services”.
Another helpful tool is a yes/no laminated card. I used to carry one or several around with me and would ask Emma to verify any yes or no question, because she often says “yes,” but means “no”. I found that what she pointed to with the laminated card, was almost always correct, while the spoken answer wasn’t as much. I have since seen iPhone and iPad apps that people use, which are almost exactly the same as the laminated card I once used. A friend of mine holds up her index fingers from each hand and says, “yes” and gestures with the one index finger, or “no” and then gestures with the other index finger. I remember being shocked that this simple method could produce accurate answers and yet it did. Obviously if there are profound physical issues, this may not be possible, so the laminated card might work better as one can position it so that a large range of physical movement will not be required.
Ido not look forward to these meetings…especially as we have not yet established a reliable means of communication.
It’s really tricky… if you do this, even without a reliable way of communicating it sets a great example for others to follow, and it will certainly be appreciated by your child, even though they may not be able to communicate this. (Just a thought.)
As an autistic adult who typically speaks but often cannot when overwhelmed, I have found that the index finger trick is pretty much magical. No, it isn’t foolproof, but holding up each index finger and gesturing which one is yes and which is no – slowly, and sometimes three or four times – both allows me the opportunity to answer without feeling like the asker wants a scripted response, and also allows me the time to compose myself and calm as much as possible before moving on to the next question or issue.
Often once I get used to the yes/no finger options (after three or four questions), we can use the same technique to ask multiple choice questions without yes/no responses, by starting with two broad answers, and getting more specific.
Like I said, it’s not perfect, and it can’t possibly be a good technique with everyone (nothing really can), but finding SOMETHING that works, that let’s me communicate when I feel like my typical avenues of communication are broken, is incredibly calming and grounding, and gives me some element of control in what’s happening in my life.
Thanks so much for verifying that this has worked for you too and why!
Yes. It is so easy to just take over for our peeps who have trouble communicating. I started asking Charlie what he wants to have happen in school, in an attempt to get him to help with his own IEP. I explained that it is a plan that his school MUST follow. He said the following:
Don’t make me eat weird foods that I don’t like.
Don’t lock me in rooms or close the door so I can’t get out.
I want to play basketball and sports
And the list went on. He’s 14. He is legally allowed to be heard. I am going to be sure that his words carry as much weight as anyone else’s do and I am going to be damned sure not to sign that thing at the meeting.
Presume competence is my new mantra.
Yeah, the talking thing is a big one. I mean, how we talk to our kids, not how or if they talk. To keep myself on track with what is “age appropriate” I spend a lot of time with kids his age (I volunteer in his class a lot) and also use his sister (she is 17 months younger) as a rule of thumb. If I am not sure how much detail to give him about something, I consider how much I would tell her. I fully acknowledge that it’s a work in progress for me.
“A work in progress” is I think code for life!
I love how I always learn something new here! My son is verbal, and becomes unable to speak when he is feeling strong emotions or is sensorily overwhelmed. As you point out, it is difficult to shift gears from expecting a verbal response to having to interpret his non-verbal response as well as help him manage the sensory overload or parse out his feelings.
Which is why I LOVE LOVE LOVE the idea of the yes and no cards. I think these would be terrific tools for those times when he cannot verbalize what he wants and needs. Thank you!
I, too, demand that our IEP professionals list his strengths – we made it part of the IEP language itself – and demonstrate to me how the plan builds on those strengths to assist him. I have got to see a nexus between the gifts he brings and the accommodations they are suggesting.
Let me know how it goes!
Unfortunately we have dermatologist’s appointments in Flushing that morning and I don’t think there is enough time.
Sent from my iPad
Hi Isabel… not sure what you are responding to?
I am verbal, but especially of late I find that I cannot communicate *meaningfully* when overloaded or emotional. I’ll speak, but what I say is impulsive, raw-sometimes defensive- emotion and not what I actually think. Sometimes it isn’t even what I’m really feeling. The last time I got very upset, I tried using my AAC app to talk until I calmed down. It worked partially. It allows me to think before I output. Now I need to work on knowing when I’m actually calmed down. =)
awesome post as usual 🙂 We just got my son to start using a yes and no board that I made, hoping to graduate soon to a letter board 🙂
Presuming competence seems to have so much to do with not automatically assuming lack of ability to communicate means lack of ability to think. And that not communicating in “normal” ways does not mean one is a child. Being infantalized all the time, it becomes hard to believe in one’s own ability to be an adult. This is enormously damaging, intensely abusive, most painful thing self has to struggle with.
Have a “friend” who even when cannot type well still believes am a competent adult and continues to treat self as an adult. He uses yes and no ASL signs during sex because have trouble typing, and he accepts that as true and valid communication. It was so extraordinary was crying happy tears the first time. A very treasured friend, very rare to find people who are that convinced of self’s right to adult status.
Just in case people decide to “worry” (ie. continue to infantalize self): am legally an independent adult and have no more trouble with consent than most other adults, despite what abusive people at Adult Protective Services might think.
So very important to start presuming competence when person is young, does so much damage to do otherwise. So important to be respectful in ALL situations. Not just when it is convenient or easy. Otherwise one gets adults like self: having to keep asking therapist if am “allowed” to do things other adults get to do, worrying about whether am smart enough to understand, feeling bad for having adult thoughts and wishes and needs, struggling to go against advice of “real” adults when self clearly knows what self wants, and so much other unnecessary pain…
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I use the finger trick in the swimming pool where we cannot take the IPAD. I shall be adopting the “there is nothing wrong with his hearing” statement for our meetings. I love it!
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The ultimate test of presuming competence is *not* assuming the other person is able to communicate – and, wishes to do so.
The ultimate test of presuming competence is: “are you – the listener – willing to hear what is being communicated.”
While I do not recall presenting as ‘classically autistic’ as a child (think ‘really bright, really strange, and physically deformed’) I do recall being treated then as if I were ‘a strange and so-horrible tragedy’. At the time, I was told it was due to having a birth defect.
Many years later (after being diagnosed as autistic some years ago ) I learned more – as to why I was so consistently projected upon, ignored, abused, threatened, hated, and (physically) attacked.
When one is judged to be ‘not-quite-human’, the innate rules which govern human behavior – the so-called ‘folk psychology / theory-of-mind’ tend to get overwritten by ‘the law of club and fang’ (jack London, the call of the wild).
That is when no speech is adequate. One’s diner wishes his or her meal to be silent and unprotesting – as is appropriate for a prey-item.