Presuming Competence

Affect Autism: We chose play, joy every day

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This Week’s Podcast

This week’s podcast features returning guests, Special Educator Jackie Bartell and Speech Language Pathologist Bridget Palmer who are both DIR Experts and coaches in ICDL’s DIR Home Program, and who both teach courses at ICDL. Amy McMunn is the mother of two young adult autistic sons and a Spelled Communication Practitioner. Today’s topic is presuming competence, one of the pillars of the DIR Model and DIR/Floortime.

Presuming Competence

by Affect Autism

https://affectautism.com/wp-content/uploads/2024/03/2024-03-15.mp3

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Autistic Self Advocacy Network Guide for Parents of Autistic Children

I started the podcast by reading some excerpts from the Presuming Competence section on page 18 and 19 of the Autistic Self Advocacy Network’s Guide for parents of autistic children:

• Presuming competence means knowing that your child has thoughts and feelings. It means knowing that your child can understand and learn new things.
• Presuming competence also means having high expectations for your child. Your child has the potential to live a happy and full life. That potential hasn’t changed because of getting an autism diagnosis. If your child shows interest in doing something, you should help them explore that interest. You should help even if others say it would be too difficult for your child to participate. Work to make sure that your child gets the same opportunities as other kids their age.

What does Presuming Competence mean to you?

To Jackie, presuming competence is an evolution. It used to be about being nice and including someone in what everyone was doing, but Jackie realizes it’s much deeper than that. It has more to do with presuming that the person in front of you has something to share, has an idea, and has an amazing capacity to experience this world, and share that with you. As a practitioner, you have to open your ears and eyes in a different way, she says.

Bridget presumes that everyone she’s with understands, and that she’s part of the relationship with them. She thinks about her facial expressions, her affect, her intonation, the words that she uses verbally or via an Alternative and Augmentative Communication (AAC) device. She wants to be attuning to the communication partner she’s with. If they’re understanding her intent to communicate, she wants to understand their intent to communicate. How are they communicating?

We are all communicating in different ways other than verbally all the time. We never want to think that because someone isn’t talking that they don’t have something to say, or that they don’t have desires, wishes, and ideas. There’s lots of ways to convey information, Bridget says. How does someone let you know what they understand and let you know their ideas?

Bridget’s presuming they can be a communication partner, a friend, and be in the world as themselves the way they are, respecting who they are, and she’s listening to adult self-advocates, whether they’re typing, using AAC, or using spoken words. She will listen and presume their competence in their relationship with her.

The Lived Experience of Presuming Competence

I am thrilled to have Amy on today since I feel ill-equipped when I discuss non speaking individuals or AAC because I don’t have experience with it, as my son has almost always been very verbal. Amy starts by thinking about the topic of presuming competence. She says that thinking back on her journey, this was the last thing that parents were told to do or taught to do. It was the last thing that was every modelled.

Amy spent most of her son’s younger years trying to ‘fix it’. It was in the early days of Defeat Autism Now (DAN). There were DAN doctors, allergists, nutritionists. She saw them all and tried everything. They didn’t tell anyone their son was diagnosed so he wouldn’t be labelled. They piled on therapies and interventions to change and get them out of the situation.

More recently, Amy’s sons have come into young adulthood and have developed their own identities. One of her sons is a proud member of the neurodivergent community who educates her daily on her missteps and she is so grateful to have a different perspective on it all. Along with the diagnoses, Amy continues, there have been problems because her sons have been made to live in a world that didn’t presume competence, did not understand their diversity, and didn’t respect them as individuals.

Amy’s older son is a nonspeaker and communicates using a letterboard. She didn’t think he could do that. She didn’t dare hope. She had glimpses of it when he was 11 or 12 years old. Their old school speech therapist told her that if you boiled speech down to very basic elements of Yes and No, you could get communication, and she did with Amy’s son. She gave Amy a list of questions she asked her son and the answers he gave her using the Yes and No cards. He knew what a checking account was, who the president was, what yellow fever was, and knew geography. Amy got into her car and cried.

Amy was eager to try it herself and went upstairs one day after school. She wondered what to say for the first time to her child. She asked if he was happy. He said yes, maybe more to brush her away. This was the beginning. A couple years later they found their way to Spelling to Communicate. He’s had a long road, Amy laments.

Living in the Damage

Amy asked him what her older son would want to say on this podcast and he gave her permission to share this information about him. She feels part of presuming competence is about not oversharing information without his permission. He said that he is traumatized. He doesn’t feel as though he’s capable of anything or been successful in anything in his life. He has a bleak look of the future.

Amy’s trying to help him with processing two decades of being told where to sit, where to stand, and how to feel. He wants people to know that everybody deserves a chance, a voice, a future, and a right not to be left in the corner of the room to rot. Amy feels that this is his experience, unfortunately.

When he graduated at age 22, after having an extra year due to Covid, Amy was at the school. As his teacher was gathering his things, she told him he needed to “go potty“. Part of presuming competence is not telling a 22-year-old they need to go ‘potty’, Amy says. She stood there horrified as 5 to 10 people were in the room and he was being told where to go, what to do, and to sit on the toilet, completely exposed in front of these people. She vowed that over her dead body would this be the rest of his life. We’ve gotten it wrong, Amy says.

Amy now sees her son in burnout with mental health and self-confidence concerns, all because of the way society has programmed him. To her, presuming competence is a very personal thing. She’s watched the story play out in front of her and seen her own role in it–her evolution in it. Right now, they’re living in the damage of it, she admits.

Opening that Space for Presuming Competence

I feel for the situation that all of Amy’s family went though. I feel for Amy as a mother wanting to do what she thought was best, not knowing how, not being equipped, not being supported, and obviously for her son who has been in the circumstance that she described. I feel grateful for the neurodiversity movement that has taught us so much. I feel fortunate that my son was born later and that we have access to this new information.

In ICDL’s parent support group that I facilitate weekly, there are parents of very young children using AAC as very young children, which is a newer thing that is slowly becoming more mainstream. I know and see many kids who are my son’s age who are nonspeaking who have never been introduced to AAC. I struggle with that–who am I to tell them what to do? At the same time, I think they would appreciate the information.

Jackie says that a space has been opened because of the neurodiversity movement, and because of this opportunity to be able to communicate with her son and the embracing of ‘he can’–a space that might otherwise not have been opened up. Without the notion of presuming competence, that may never have happened.

When Jackie interacts with neurodivergent individuals, she has to work really hard with herself to remember that the person before her has the capacity to communicate and deliver ideas, and she has to change what she’s doing to receive that information. How do we attune to that person so we give them the space? She can be in a position to be comfortable to say, “I don’t know, but I can be with you so we can figure it out“. She has to change what she’s doing. That’s the important piece. That’s when we start to move forward.

Presuming Competence in Communication

Bridget thinks about communication and each of the parents she’s spent over 20 years with. They might not yet know how to build a communication system to support the family, but we know we can support communication. There’s lots of ways. You can use a voice output device, photographs, sign language, pointing, leading by the hand, watching eye gaze, tuning into what they’re going. A multimodal communicator–which is what we all are, all of the time–is what we want to encourage, Bridget says.

If we don’t know what those systems are, we can be curious and explore, Bridget continues, but we first observe what the person is interested in, what are they doing, how are they responding to you, and what they are letting you know. They’re letting us know and we tune in to what that is. Let’s think about the opportunities of what systems are available and how we can use them and really be available to be a communication partner, understanding what it is like to be in communication with someone else.

How do you tune into the other person, respond to them, build reciprocity, and get into that opportunity for shared social problem solving? What do I do if I don’t understand Jackie’s message? Bridget says that she’s going to stay with Jackie until they get to a place where she can understand, or they both decide something together. You do that by being engaged, connected, persistent, and by presuming competence. We also respect when someone doesn’t understand us and wonder how else we can convey this message and clarify, Bridget says. How can we think about the opportunity for repairing the communication?

Autistic Masking and Neurodiversity

I referred back to the autism masking podcast with Kieran Rose and Dr. Amy Pearson. They talk about a lot of what our guest today Amy discussed: burnout, mental health issues, trauma, and the cost of not presuming competence and not supporting autistic people. It really strikes me how much this impacts people –having the ability to communicate. Communication is certainly a large part of presuming competence.

Today’s day in age, Amy loves that there is a change in the wind in the neurodiverse community where they are taking ownership and pride in their neurodiversity. It’s such a change from doom and gloom. We have so many examples now of neurodivergent individuals–struggles and all–exuding pride, and she is so happy her sons will come into their adulthood into this new world.

Spellers

Now that Amy is a Spelled Communication Practitioner, she’s sharing what she’s learned and helping others. Her caseload mostly consists of adults in their 20s and 30s. The parents were told all the same things that she was, and yet, they found a way. You find a way, Amy says, like Bridget said, to communicate. Whether it’s taking your hand and leading you, or some other way. Amy loves watching the love between caretakers and the neurodivergent individual in their lives.

It’s been an extreme joy for her to help her clients show that they are thinking and have lots of opinions and abilities. The world has gotten it wrong, Amy declares. She considers this opportunity a very special place. It’s a full circle moment as someone helped unlock her son’s thoughts and taught her to approach him differently. She can now do that for other families.

Jackie says the notion of presuming competence plays across everyone involved, including for the caretaker to communicate with their loved one in a different way. It’s been a beautiful thing to watch.

Changing Ourselves

Jackie mentioned that presuming competence is more about changing yourself and it’s been what I’ve been working on with my own son who is a teenager now, but whom I’ve continued to think of as a younger child. Like many parents of children who have gone through medical trauma, I just want to do everything for him and not see him struggle, but it’s doing a him a disservice to not foster independence.

I also wanted to bring up the topic of boundaries, and having a way to set boundaries in an appropriate way. Jackie says what’s important here is that we don’t want to force people to do things they’re uncomfortable with. That is part of the presumption of competence. We want to assume competence about intellect and emotional competence: that the person before us has the capability to articulate their emotional experience and that we have to honour and respect their emotional experience even if it doesn’t fit with what our bigger plan was.

Skewed Expectations

Jackie warns that if we’re not careful, what Kieran Rose and Dr. Amy Pearson shared with us can happen–that we can be forcing people to be doing things that are very icky and painful. This brought Amy to discuss her younger son who is 20 years old. He has a lot of great and articulated speech, ADHD, and a profile called Pathological Demand Avoidance (PDA). A lot of PDA individuals have trouble with school and don’t attend school. The traditional school model doesn’t work for them.

Talking about presuming competence, this was not a matter of him ‘not liking’ school, Amy states. It was a matter of his nervous system not being able to do this. She watched the sparkle in his eye and the joy for life that he had be extinguished. He’s so damaged from it. He went into burnout. He researched it and told Amy about it. It didn’t fit in her plan to be a homeschooling mother, but that’s where they ended up. She’s been homeschooling him for over a decade.

Presuming competence, Amy continues, looks different with each of her sons. While it’s the same thing, it looks different. The labels of ‘low or high functioning’, ‘profound’, or ‘severe’ are so damaging. Imagine being in the label ‘low’, ‘severe’, or ‘unable’. Imagine what that does to a person. Her younger son is in the category of ‘high’ and everyone assumes that because he’s ‘high functioning’, he should be able to do x, y, and z. The pressure is incredible to him, she shares.

Presuming competence is to say that we expect someone to know their own limits, and if something is crushing to you, then I will validate that, and we will find a way, Amy says.

Understanding our child’s limits

It’s not about “I don’t want to” but it’s rather, “I literally cannot do it“. I wondered how a parent teases apart what our child can do but just doesn’t want to, versus when they actually really can’t, and as Jackie said, you can’t always trust the speech as kids often say what is expected of them. I think the clue is in the behaviour.

Bridget says that there are situations where neurotypical people don’t want to do something which is a very big difference from not being able to because your sensory, emotional, motor, or communication system is actually inhibiting or interrupting you. There are adult autistic people who say they lose the ability to speak or use their body. If we’re presuming competence, we’re attuning to someone, we’re respecting them and listening, watching, and noticing, Bridget repeats.

Bridget says that there’s a reason for school refusal. We know that there are systematic things in school settings that don’t support our neurodivergent loved ones. The systems are flawed. If we are listening, observing, and attuning to the people we love, they are telling us. If they have a stomach ache every day, there’s a reason they have a stomach ache every day, Bridget continues. Relationships build on security and safety. These safe relationships might be at home or in another learning environment. Trusting what the person is telling you is important.

That’s where there’s a fine line, I added, and a danger in the term presuming competence because we don’t want people to have the idea that you are competent and can do it the way people assume that someone labelled as ‘high functioning’ has competence and ‘should’ be able to do something. Although presuming competence means that someone has competence and the capacity to have feeling, thoughts, wishes, desires, and abilities, we don’t want to be the one who commands that on demand. We want them to have their own agency.

Amy says that it’s establishing that intuitive connection with another person. That is what she’s doing with her boys in their different situations. Validating who they are. It means listening, Jackie adds, in all of the components beyond just what they say. That’s why this is not a ‘do this’ or ‘do that’. It’s understanding who the person in front of you is and understanding their entire profile. There’s so many facets to how they communicate. It’s understanding that the other person has an emotional life, and that I’m going to be respectful of that.

The Process

As I’ve discussed in other podcasts, we talk about process-oriented learning in DIR. It’s so important to involve our children in the process. Presuming competence doesn’t mean we don’t offer support. We empower somebody with support. We support our child’s potential, but this will look very different depending on the child’s age, individual differences, and their developmental capacities.

Jackie says that sitting down and having a conversation is such a lovely way of presuming competence. You’re opening up a space to understand what’s happening. In the podcasts about feeding we covered how you can involve your children in meal planning so that when you have the meal and they say they don’t want it, you can say, “Hey, wait! You picked this out!” versus doing everything for them. Involving our children in planning their own lives and making decisions about their own lives is part of presuming competence.

Amy says the skills questions in a test she’s done with her 22-year-old have never been asked before in his life. They include such questions as, “Who is your support system?” The curriculum leading up to his graduation was, “What kind of clothes do you wear in winter?” There was nothing about planning your own life, Amy shares. The first time he had to answer these questions, he didn’t know what to do. He shut down. We are living in the trauma now, Amy said, because of the lack of presumption of competence.

When I interact with the parents of children 10 years younger than my son in ICDL’s parent support group, I tell them what I would have told myself 10 years ago. I brought up how Dr. Gil Tippy talks about how he sees such blossoming in young adults in their 30s and 40s. There’s always room for potential and growth.

A Strengths-Based Approach

The trauma piece is something that’s very, very difficult. I’ve not done a podcast about it yet because I feel like I’m not worthy of having that discussion, but it is important to go through these things. It’s something that will be a long journey to unpack, building the golden building blocks of who you are, what you feel pride in about yourself–working from strengths and building from the strengths. It’s a good place to start. Bridget says that when we think about bringing out the best in someone, it’s presuming competence.

If you’re holding confidence, comfort, control, communication, and connection in mind, Bridget continues, and you’re in a relationship with someone else where they feel safe and secure, then you can have those conversations. You will have the opportunity to think about connection and what it feels like to be understood, take a risk, try new things, and do the things that you do so well. When Bridget shared ‘presuming competence’ with a mother of a 3-year-old client, the mother said that nobody ever shared that with her before. It had felt like a lifetime to that mother where nobody had said that to her. We can say, “I see you. I can’t wait to hear what your ideas are.“

Points to Remember

Speaking to someone as if they’re still a young child tends to be what people tend to do with different types of disabilities. Being able to educate people on speaking to others as equal human beings is important. Jackie adds that it’s important that we reflect back on ourselves about why we infantilize others. She thinks it has to do with discomfort, lack of understanding, and a need for control. In her profession, teachers are supposed to teach, and children are supposed to learn by being compliant about what the teacher decides what is important.

The teacher is the controlling force. If she lets go of that control, there’s potential for chaos, from some people’s perspective. But Jackie says that this can be a space for people to learn and grow together. She suggests asking ourselves what need we are meeting by interacting in these undesirable ways? It sits in that space of control, she believes.

Amy adds that one of the important principles she learned when training to be a Spelled Communication Practitioner is that when presuming competence, you should apply the least dangerous assumption. When there is an absence of conclusive data, you make decisions on the assumption that if you are incorrect, you will have the least dangerous effect on the person’s mental health and ability to function.

She is learning it every minute of every day, she says. There’s no ‘a-ha’ moment. She’s learning along the way. She is reminded everyday that she is not neurodivergent, as she is reminded by her younger son. He says to her, “Are you sure you aren’t approaching that in a neurotypical way?” Bridget loves this and will hold this in mind.

This week’s PRACTICE TIP:

This week let’s stop and reflect on how much we presume about our children. Are we presuming independence and providing agency? Are we presuming competence?

For example: Let’s make an assumption that our child can do something that we did not imagine or think to presume and look for signs that it is possible. Let’s attune to them and change what we are doing, ourselves, to receive their ideas. Let’s be comfortable in sitting with them to figure it out.

Thank you to Jackie and Bridget, and especially to Amy and her sons for sharing their story to help spread information to others about presuming competence. We hope you found it very enlightening and will consider sharing this post on social media.

Until next time, here’s to choosing play and experiencing joy everyday!

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