He Proved Me Wrong: On Autism and Presuming Competence

mirrorOne of the phrases that you hear a lot in the autism world is “Always presume competence.”  If you haven’t heard the saying, it’s a simple concept.  Autism is a neurological issue in the brain –not a mental illness or intellectual disability.  Yet, some people assume that it must necessarily coincide with an intellectual disability.  (Which is just an incorrect as assuming that everyone with autism is a genius– another autism myth.) Autism exists in persons with widely different intellectual abilities.  From the intellectually disabled to the average Joe to geniuses.  So, because we currently lack the ability to assess the intelligence of the severely affected, we don’t know what is happening in their minds.  It might be that a perfectly intelligent person is hidden behind his or her autistic traits, and we simply don’t know how to interact with them.  And it could also be that an autistic person may be intellectually disabled and lack – to varying degrees – the ability to comprehend what is happening around him.  But, in the absence of knowing for certain, then we simply must give such persons the benefit of the doubt.  I would certainly hope that – if I were in their shoes – the same would be done for me.

But “Always presume competence” can be a hard rule for non-autistic folks to follow.  That’s not because we don’t agree – at least in theory.  But severely autistic people may not give a lot of signals that they understand something.  They often do not appear to be listening or watching.  And, when you ask them to do something based upon what they have seen or heard, many do not respond as we would expect them to.  In the absence of any visual indicators demonstrating competence, it is easy to wonder whether understanding is happening at all.  For, somewhere in the back of a typical person’s head, we wonder why someone who understands doesn’t respond when it’s in his best interests.  It’s a lot like religion.  You can be taught the tenets of your faith.  You can reason out your belief system in your head.  But, in the day to day grind of living, it is natural to question what we cannot see.  We wonder if there is a God out there.  And we wonder if our severely autistic loved ones really comprehend all that is happening around them.  Maybe you’ve never wondered.  Maybe you are like those fortunate folks who have never doubted their faith.  But, if you’re like me, you have wondered, worried, and sometimes been haunted by the possibility that you are wrong.  Or even that you are right.

When I began to be convinced of Callum’s autism, of the first things a mother of two autistic children told me was never to talk about him while he’s in the room and to always believe that he knows what is happening.  She related stories to me of her children recalling events from years earlier that she had believed they had not noticed.

But they had.  And with perfect recall of the details.  Because they didn’t talk at the time or cooperate with what was requested of them, she had assumed they weren’t listening.  Having known them at that time, I would have agreed with her.  They didn’t appear to be listening at all.  At that time, they could barely talk.  No, we shouldn’t have assumed, but -unfortunately- it’s an easy mistake to make.

Fast forward several years, and now I have an autistic little one of my own.  But even having heard her story, I questioned the truth of it with regard to my own child.  I’ll admit that I was somewhat confident of my own ability to read him.  I thought I would see the proverbial light bulb go off and then I would presume competence.  But Callum, in the grand tradition of children everywhere, has humbled me recently.  We are having a little “language explosion” you see.  Almost every day now, he is surprising us with knowledge he had – but had not previously shown. Knowledge I was so very afraid he wasn’t absorbing.

My smart little stinker is proving me wrong. And I’ve never been so happy to be wrong in my entire life. I worried that he would lack the capacity to advocate for his own needs. That worry ate me alive inside. It haunted me. I was stuck, and I couldn’t get unstuck. It wasn’t that I didn’t believe in my head what others were saying.  But faith is hard in the absence of proof.  My fears for him have been impacting my perception of what he knows and can do.  That has led me to an important realization.  I must tame my fears.  I must accept that fear is nothing but a good survival tool.  Like every emotion, it has a purpose.  It makes us run from danger.  But the only danger with regard to believing in his abilities is the off-chance I’m wrong and suffer the disappointment.  And my fear of disappointment is a selfish reason to give in to worry.  Not disappointment in him, of course, but disappointment that he might not be able to direct his own life.

I have always been a believer in “Prepare for the worst, and you’ll never be disappointed–only pleasantly surprised on occasion.”  Which is a very good motto when building bridges and skyscrapers.  Unfortunately, it isn’t such a great motto when raising developmentally delayed children.  For, like all children, they see themselves reflected in our eyes.

Callum CheeseToday, Callum spoke his name for the first time.  And I missed it.   It sounded more like “Cam”, so I didn’t pick it out of his typical babble chatter until he said it a few more times–while waving at his own reflection in the mirror.  (Yeah, I know.  Sometimes, I am not so smart.)  I remember turning and asked him if he’d said “Callum”.  So he looked back to the mirror, waved at himself again, and said, “Callum” — with the sweetest smile.  I’m sure I stopped breathing for just a moment.  Overjoyed though I was that he finally said his own name, what hit me was his determination to be seen and heard.  He kept on – until I got it — and then confirmed it.  Apparently, he was motivated to speak his name by the reflection of himself in the mirror.  A reflection he liked.

So, now I must learn how to adjust the mirror in my eyes to reflect who he really is and who he can be.  Because he is watching.  He is listening.  He is learning.

And when he looks at himself through me, I want him to like and be inspired by what he sees.  For, if what he sees in my eyes is not faith in him, how will learn faith in himself?

21 thoughts on “He Proved Me Wrong: On Autism and Presuming Competence

  1. lucille estes

    This is one of your very best summarizations of self-observation on Callum; keep up your posts, they are great.

  2. Krystal

    I love this!! Puts so many things into perspective. I know that there are many times that we forget to realize – they are there!! maybe not the way we want them to be or envisioned them to be but they are there!!

  3. Jenny Saul-Avila

    I had another thought about this (after having commented on FB) – so many parents talk about their kids in front of them – NT or not. We just *hope* they don’t bear us any ill will for it. I guess it saves them the kind of stuff I used to do as a kid – which was eavesdrop to see if I was being talked about. 😉
    But in all seriousness, we should always be mindful & respectful of our kids’ feelings whenever we speak & they may hear.

    1. Katrina Phillips

      Jenny I think you are absolutely right about that. I have often noticed how much adults tend to brush off their children and say things about them to other people as if they were not standing right there. (My parents used to do it to me all the time when I was a kid and it made me crazy.) I think NT kids do get into a habit of ignoring adults a lot, and of course, are very good at making themselves heard when they DO want your attention for something. But with our ASD kids, *especially* our non-verbal ones, it is easy to almost forget they are there when they are being silent and aloof. It sounds terrible, I know. And while I think I do a pretty good job of always assuming my kids are listening (especially since we are homeschoolers, and they are always around!), and attempt to be respectful of ALL my children (2 ASD, 1 NT), I am ashamed to admit that there are times when I realize I left the house for whatever reason and forgot to seek out my non-verbal son to tell him good bye. And it makes me feel AWFUL and I hate myself for it, because I know that my other 2 kids will at some point ask my husband “Where’s Mom?” if they come downstairs and don’t find me there, and get informed and go “ah, ok.” But HE won’t ask, so I feel like that must just look so bad to him, like we don’t care to include him in this information, and he just has to wonder.

      And as for the bits of speech that sneak out – that happens to us a lot too. You get so used to the mix of silence and chatter, that things will slip out and it will take a moment for you to do a “did he just say….?” Mine said my daughter’s name last week for the first time, he said ti just once. And we almost missed it too.

  4. Sue Cranmer

    How very true- I had tears in my eyes as I got the part where he said his name and kept saying it till you got it.

  5. Jo Ashline

    A tremendous post. Truly. Just a beautiful self-realization that you took the time to share with all of us, so that we might have a chance to correct our own assumptions about our children before it’s too late.

    I wish I could say with absolute confidence that I know exactly how competent Andrew is. But I don’t. His is a tangled web of multi-diagnoses that render us confused on good days and fearful on bad days. It’s increasingly obvious that Andrew will not be able to live independently someday, but I can’t say I’m surprised. That’s not the same, however, as giving up on the believe and knoweldge that he is more than capable of learning and adapting and progressing beyond any doctor’s or teacher’s imagination.

    I also agree about speaking about Andrew while he’s in the room. I know for a fact that our son absorbs our conversations in his own way and it’s unfair to speak about him in front of him, as if he didn’t exist or have feelings or opinions on the matter.

    Yes. Our children humble us. It’s truly one of the greatest gifts of parenthood. That and that whole love bursting out of every cell kind of feeling.

    Bravo honey. Bravo.

  6. Joy

    I honestlly would probably kick myself if I knew all of the things I’ve missed that E does and knows. I am currently reading Ido in Autismland and although I was fairly lucky to find people that taught me to presume competence early on…some of the stories of non verbal autistics that I’m reading make me wonder if I presume ENOUGH competence. Following adult autistics has been the single most helpful thing I’ve found so far in helping my children. But as a parent I understand how easy it is to watch their outward actions and assume well I’m the mommy I’d see it then get proven wrong

    1. Katrina Phillips

      “Following adult autistics has been the single most helpful thing I’ve found so far in helping my children. ”

      Me too! <3

  7. Lynne Pardi

    Beautiful!! And so very important and true!! Every parent/teacher/babysitter of an autistic child needs to read this. Thank you, thank you from my heart!

  8. Antonia

    Thank you very much for your time, honesty & courage. This post has strongly resonated with me. You have changed my parenting.

  9. Robin

    It can be very humbling! Last year around Finn’s birthday he and I were sitting on the couch, trust I use the word sitting loosely. He was all excited and bouncing around and babbling. Finally I looked him in the face and said he needed to calm down and tell me slowly. My beautiful boy said to me clearly “I’m five!”. I was astounded because he is a little man of very few words! So I smiled at him and told that yes he was five and wasn’t that exciting! He then calmed down and snuggled in…..he just wanted to be heard.

  10. Miss Mommy

    Thank you for your beautiful, thought-provoking post. It resonated with me for so many reasons, and it is a reminder that we should try not to underestimate our children’s potential. I was specifically drawn to your commentary regarding children with autism being more aware than we may realize because this is a topic that has been on my mind a lot lately. As a mother of a non-verbal toddler with autism, I have often wondered just how much he actually understands. Does he understand what we are saying? All the times we tried to teach him numbers, letters, shapes, etc., did any of it sink in? It can be extremely difficult to gauge a child’s level of understanding when he or she lacks communication and language skills. Moreover, people often associate a lack of language with a lack of intelligence, but as you so eloquently put, there is no way for us to tell exactly what goes on in our children’s mind when they are unable to express themselves. For this reason, I always try to be mindful of what I say and do around my child.

    1. Joy

      probably more than you think on the letters, number, etc. My son was about 2 1/2 and was correctly (when he felt like it, he makes up his own rules sometimes) matching and picking the correct letters on some of his iPad apps. But wasn’t sure so one day in the bath he was being particularly cooperative and had some foam letters…they were floating around him and I asked him to find one…and he did…multiple times. fast forward to now, he turned 3 in Dec and the other day randomly on his drawing program on ipad asked him to draw a letter…i had to touch his elbow (it helps him realize where his arm is) and he drew a pretty good version of several of them. I would highly recommend the book Ido in Autismland if you haven’t read it…or just follow him various places. I think in many cases there is a lot more going on in there than we think 😉

  11. Miss Mommy

    That’s a really good example. People often assume a lack of understanding when a child is not being responsive or cooperative. I know quite a few people have assumed that about my son, and sometimes that really bothers me because I feel like my son is worth the time and effort. I am of the opinion that assuming incompetence is a hindrance to a child’s development and serves only to limit their potential. Moreover, I wonder about the effects it could have on a child’s self-esteem. If they really do understand what is going on around them, then surely they can sense the attitudes of others, specifically with respect to how others perceive them.

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