Presuming Competence: Changing How We Think About Autism and Ability

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Navigating Neurodiversity, a podcast of the ARC Southern Chesapeake.
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We were formerly known as See Me, See My Ability.
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I'm Rita Rich, the host and producer. Recently, I had the chance to catch up
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with an award-winning science and health reporter named Kelly Collahan Robertson.
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We got way back to the point in my life when she showed me the ropes at a radio
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network where I got my start many years ago.
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Kelly is still teaching me a thing or two. Please listen to our conversation
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that is fitting as the first episode of Navigating Neurodiversity.
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Let's get started with what I always teach my students is make sure you get
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the name of the person and how they want to be identified on a recording. So please go ahead.
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Yeah, sure. I'm Kelly Collahan Robertson, and I describe myself as a writer.
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I'm writing a book, a caregiver to my 24-year-old autistic son and an autistic ally.
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What I wanted to talk to you about, because I thought it was a fascinating conversation
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we had, you were one of my mentors when I started in network radio.
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And when we first got back in touch a couple of months ago, more or less.
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I was talking about my life, you were talking about your life,
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and I was explaining how some mutual friends, acquaintances of ours would describe
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that, oh, you've had such a challenging life.
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And you said, you kind of smacked me down, which is good.
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I want you to talk to me about how people who meet you need to adjust their
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attitudes about you being a parent of somebody who's on the autism spectrum.
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Smack me down, Cal. Yeah. Yeah.
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I tend to do that. But, well, basically, it also, it's problematic to frame
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someone as a parent of somebody with autism in a negative way, I should say.
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Remember the days in journalism when we were starting, you know,
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the newscasters would say, and he has autism. And the way they would say it,
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it would be like, it's a tragedy.
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My son is not a tragedy. Like, he's never been a tragedy. I've never seen him
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as a tragedy. In fact, he is so much fun.
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And he is, I always knew he was so smart. I didn't even know what IDD meant
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until about 10 years ago. Oh, he's 24, so I never saw him as IDD because that's a blanket term.
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Those who are listening, I'm assuming, know that that is, but that's intellectually,
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developmentally disabled.
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And what we're finding is that so many of these individuals,
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autistic individuals, also those with Down syndrome, cerebral palsy,
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other syndromes like Angelman syndrome, are not intellectually disabled.
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So that whole label, that whole paradigm really has to go.
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You know, instead of focusing on the negatives of these individuals,
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let's focus on what they can do. Superior pattern recognition.
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My son takes calculus. I mean, I don't do math.
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So it's not something that he's getting through me like he loves math,
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so why not focus on those type of things and yeah no it also
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i also think too that you know the old the old way too of centering the parent
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it's we're not that important obviously the parent isn't that important that
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let's center the individuals,
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let's center the individuals let's hear from them and of course we couldn't hear from them.
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We can't hear from them if they don't have,
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What do they need? A reliable way to communicate. So many of them now are getting
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a reliable way to communicate by using a laminate letterboard to communicate.
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We are part of that group of people who use letterboards and keyboards to communicate.
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That's how my son has taken three community college courses.
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He doesn't write. He doesn't have the fine motor skills to, he can write a little
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bit. I shouldn't say that.
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He'll write a card to someone, but he doesn't tend to use a pen or pencil to do math even.
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He does it in his head and he does it with a laminate letter board with numbers,
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a number board, and he can do his math that way.
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So yeah, I don't see my son as a tragedy or it's challenging.
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I'm not trying to minimize people.
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Complex autism is definitely no picnic. So let's not, you know,
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just put it in rose-colored glasses. We've been through a lot of medical issues
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as well, you know, wrapped into the whole autism picture.
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So yes, it can be a huge challenge, huge struggle.
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We had years of big struggle.
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So, yeah, that's it in a nutshell. I've been sufficiently smacked.
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I've had my attitude adjusted.
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But I want to talk about community because nobody Hillary Rodham Clinton made
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fun of by some people who just didn't like her for saying that it takes a village to raise a child.
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She wasn't the first one to say that. It really does take more than one person
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to keep an eye on all of the children, even if you're not a mom yourself like me. I'm an aunt.
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And I notice things in the world, and I let people know if I think they're doing
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something stupid or dangerous, even if their parents might look at me like,
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why are you interfering?
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So let's talk about your community and the people that you've had help you along the way.
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Yeah, sure. And that phrase, by the way, it takes a village that comes,
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that's an African adage, right? So that's like an ancient saying that's been
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used in Africa for hundreds of years.
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But yeah, our community, I live in the Atlanta area, and we have a really strong community.
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So that has been crucial to me. In the early days, I was clueless.
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In some ways, I'm still clueless. I'm still learning a lot from my son.
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I'm learning from these individuals.
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I'm learning by hanging out with them. And by the way, you know,
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they're more interesting and they're very varied as well.
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Of course, like there's such a variation of, you know, you might,
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it's, it's, we really cannot stereotype autistic individuals at all because
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they're so interesting and different from each other as well.
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But our community has been really great. It started with our school.
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We have a high school called the Capacitans.
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School of Atlanta. I think that's really when I feel like I've found my people and my community.
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Repeat the name of the high school you dropped out from. Called the Connection School of Atlanta.
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We had struggles in the early years with my son in schools. You know,
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he'd go to public schools and they just weren't getting him.
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And he was in classes with 30 people. And then we were getting the so-called behaviors.
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You know, that's when I was working full time at CNN and, you know,
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I'd sometimes get calls, you know, at work, I'm editing a piece or something.
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And they're like, your son is having a meltdown. And he never had that type of behavior before.
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So you have to, you know, like the plant and looking at the soil that you put
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the plant in, you have to look at the soil and the environment.
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And in those early public school years, you know, I'd go in and see what was
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happening. And the teacher, again, And nice people, good people,
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good solid elementary school teachers, but they were overwhelmed often.
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Every year was different, but this one particular instance I'm thinking of,
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this teacher was overwhelmed.
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She had too many children in that classroom.
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When I went in, I felt myself getting nervous. And I thought,
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God, if I'm getting nervous, like, how does my son feel?
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And so we pulled him out, basically, of that school and tried various different
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private schools. And we were fortunate enough to do that.
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Me and his dad, you know, were able to do that, put him into different private schools.
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Nothing really clicked. I always felt like, you know, this isn't really the place.
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Until we found Connection School of Atlanta. And that was a small startup school.
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We were one of the founding families.
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So there were, I think, six of us that first year.
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And they introduced spelling to communicate using a letter board.
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And at that point, I didn't think my son...
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Understood or needed that type of thing because he has some speech.
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My son is what we call an unreliable speaker. So he has some mouth words.
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But I started to really learn then. And the folks at the school taught me that
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people who are unreliable speakers often.
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Say something they don't mean. So what comes out of their mouth is not what's inside of them.
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And my son started to work with a practitioner there, and he would spell out,
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he spelled out things like, please ignore my verbal vomit, because he had a lot of verbal stims.
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I guess everybody knows what a stim is, right? Like, yeah. So verbal,
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right? He had a lot of verbal stims.
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So he wrote, please ignore my verbal vomit, which means he goes off topic and
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every thought comes out on his writing? Yeah, yeah.
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He was just not able to. He was saying things he didn't mean.
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And a lot of our students do say that their bodies don't listen to their brain.
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So that's another theme that we see in the autistic community.
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The folks that I've interviewed for my book, I've interviewed many non-speakers
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and unreliable speakers to get their viewpoint. And.
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One of the common themes is, my body doesn't listen to my brain.
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And many of you... I got to ask you a question. Were you aware that your son
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was picking up spelling?
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I mean, he had autism. How could he learn how to spell? How could he learn how
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to read when he has trouble explaining and maybe reading out loud?
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It's almost like a miracle that he actually learned how to do these things.
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Do you mind if I just go there for a little bit? Yeah, but it's actually,
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it's really not a miracle.
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It's us adjust. It's us. We have to change. I love that you have,
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Rita, I love that this is change your attitude.
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Because we have to change our attitude of them. Think about it. You live in the world.
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Let's say you were born and you just couldn't speak. Let's just say that's all.
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You just couldn't speak.
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You watch Sesame Street. We still love Sesame Street. You watched.
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You see street signs. Maybe your parents had closed captioning on the television.
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It's not such a leap to think that a human... I mean, if I go to Mexico for
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a month, I'm speaking Spanish.
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I mean, I have basic Spanish 101.
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I mean, you can pick up, you live in the world of letters, of language,
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so you're picking it up. So I think the main thing is we have to change our
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thinking that these individuals are capable.
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And that's great that you brought that up because that leads to a phrase that
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we use a lot in the autism community is presuming competence. What does that mean?
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It doesn't mean everybody's a savant or everyone's brilliant.
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It means presume competence. competence. This individual is capable of learning. That's all.
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And they're capable of learning at age-appropriate level.
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And because when you think about it, speech, what we're doing right now is actually is miraculous.
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That more than a hundred muscles, more than a hundred muscles all over our body,
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face, voice box have to work together and synchronize with our brain.
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Synapses have to fire for us to be able to do this but it's so it's a motor skill so speech is motor.
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But if you have thoughts and you're cognitively intact, but you can't speak,
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you can't tell anyone, hey, I'm in here.
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By the way, I understood everything you just said. I'm listening to everybody.
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You know, I'm 24. You don't have to tell me to go potty.
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You know, I'm a grown man. So, you know, those type of things,
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presuming competence is really a good just thing to remember when we're around
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these individuals. And I'm still learning that.
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I had a hard time, I have to say, with the non-speakers, because my son does
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speak and he does like laugh a lot and engage, you know, give facial recognition.
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You know, a lot of non-speakers have a hard time smiling. So I would be a little
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bit like, well, I don't know. I'm kind of, I don't know if that person wants
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me around them or what's in there.
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And now I try as hard as I can to treat them as an intelligent being and talk
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to them as you would with someone else, as you would with anybody else.
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So, yeah, that kind of is, yeah, it didn't surprise me that he could,
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you know, he worked on reading and the alphabet. But he wasn't picking up a book and reading it.
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He wasn't doing that. But, you know, he was able to.
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And then not much was expected of him. Like in the special ed classroom,
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almost nothing was expected.
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So he could have spent his whole life on that trajectory where nothing was expected.
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And he wasn't given age-appropriate material of being in a classroom with folks
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who were second grade to twelfth grade, you know, that really doesn't make sense either.
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And so our school would do things like play audiobooks.
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Age-appropriate audiobooks. A lot of these individuals learn through audio channels.
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It's called, you know, feeding the brain, giving them, and he didn't have any
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so-called behaviors at that school.
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He, I mean, he still is definitely hard for him to like sit down and he's always
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on the go and gets thrown off by, you know, the passing MARTA train.
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You know, he loves trains.
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You know, so there's obviously some, whatever else that may be,
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maybe part of the autism, maybe some other label that we don't have,
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but. But we all have. We can get easily distracted, you know.
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But with him, it's just hitting him in a different way that I'll never be able
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to comprehend because I'm not him.
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And I can't crawl inside his brain and see through his eyes.
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But, well, you know, that's the thing.
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When parents, we're into community-based care. We don't want to institutionalize anybody.
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Probably would not have occurred to you When you first noticed that he had some
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trouble saying things verbally to put him in an institution,
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maybe a generation ago, that might have been your only option. Can you explain...
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Why is that? Why, Kelly Collahan Robertson, are you different than maybe your
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mother or your aunt or somebody else in your family?
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Yeah, well, yeah, I don't know. He's just, it would never occur to me to do
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that. But I think for most of us, it doesn't occur. Some people later in life
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or, you know, again, I'm very privileged. I was working at CNN and was able
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to support us financially.
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So I wasn't, you know, somebody who had five kids and that type of situation.
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So, you know, it may partly be that it would never occur to me.
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And as you said, in the 70s, that was that was more our dominant culture was
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put them and they had these institutions open.
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And sadly, back then, right, medical professionals used to convince parents
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like they'd be better off in this institution, which is that's a tragedy.
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All of those all of those beings lost all of that intelligence never discover
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inside so for me i think i just you know i was lucky it was we were it's the
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time like we just happened to be in atlanta when,
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letterboarding was starting spelling to communicate and these text-based communication methods aac.
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Were beginning to take hold they were just starting then so we kind of lucked
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out by being in the right environment again right and then having a really great community
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you know it still was hard i still was lonely at times but i would call my autism
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moms and be like help you know or let's go have some beers or come over you
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know whatever the thing you know and so,
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yeah yeah no institution would would never occur to us,
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Kelly, let's give a plug to your upcoming book. Are you okay doing that?
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Yeah, sure. It's a work in progress. So my book is a work in progress. It's nonfiction.
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Oh, boy, just writing. I've written the first draft.
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I'll tell you that. And it's, you know, now I'm rewriting the first draft,
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honestly. So it's a bit of a slog, but it's also fun. I was just writing this
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morning. I had a few hours I was able to write.
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Yeah. And then the aim is to, I've written a book proposal is to sell it.
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It's nonfiction, and I interview many non-speakers, unreliable speakers,
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and kind of get their perspective on life.
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And a lot of the things that I just told you about in the beginning of this
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interview, we talk about their unruly bodies, what it felt like to be trapped
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inside with no way to communicate until they found a reliable method of communication.
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And then how hard that is. That's not easy. Like, we've regressed.
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Our son, my son got really sick a few years ago and he regressed in terms of
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his, you know, communicating skills.
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So it's not been linear at all. But the book looks at that and the challenges,
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it is really challenging. So yeah, but it took like full circle to what we started
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with. But yet it's so worth it.
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It's so worth it to discover these individuals inside. Like I wouldn't choose anything.
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Sharing your time with me. Navigating Neurodiversity is a podcast from the ARC Southern Chesapeake.
00:17:40.949 --> 00:17:46.406
You can hear us wherever you download podcasts and find links to us on,
00:17:48.409 --> 00:17:54.220
arcsoch.org. I'm Rita Rich.