We have AAC: now what?

image of an iPad screen with Speak for Yourself, and a list of animals in the message bar: banana, cookie, cat, dog...

Access to AAC is a fundamental human right, but it’s one that tends to be forgotten and overlooked in many spaces still today. October is AAC awareness month, which means lots of people are hearing about AAC or gaining access for the first time. The first few steps can feel overwhelming to families and professionals new to this journey. There is a fear about “doing it right” and “doing it enough”. I promise that you can do it. You can do it. You must do it. And it will be worth every step. 

Get excited. It can be really easy for AAC to be seen as a chore or “another thing to do”. It can seem like that to families, to professionals, and to AAC users themselves — especially when drilling methods are used to teach its use. It’s really important for all of us that we don’t associate AAC with “work”. We need to stop seeing on AAC as a way to drill our students on all the things they already have a way to say. We need to see AAC as a tool that allows our students to express all the other things they have to say. This isn’t to say that learning a new language isn’t hard (it is) or that magic moments happen every single day. Learning to read and to write and to speak a new language — all of these things can be challenging at times. But they are all things we see as worth it, because of the long-term benefits. We find the joy in all of the moments along the way. The first time our child spells a word by themselves, the first time they “read” their favorite memorized picture book, the first novel we pick out. AAC is like that. Sometimes easy, sometimes hard, and always worth it. 

Make sure the system is available. This is the first thing I always tell families or new teachers to do. Spend the first few weeks getting into the habit of always having the system. Problem-solve what you need to make it happen, whether it’s straps, a Post-it note on the door, a different case, etc. Assign staff members who get systems out of backpacks. Figure out a plan and space for charging if it’s high-tech. This shows your student that you truly value their AAC system, that you believe in its importance, and that you want to hear what they have to say. It’s also really hard to model on or use an AAC system if it’s not there. 

Assume intentionality. Please, please, please, please, whatever you do, please never say “I don’t think they meant it” in front of a student. I wish you wouldn’t even think it, but please don’t say it. Always respond as if your student meant it. There is no harm in this assumption, but there is so much harm in telling kids’ that you do not believe their words. If you don’t understand, be honest. Ask. “I don’t understand what you mean, can you try telling me another way?” or “Hmm, I have to think about that, can you tell me more?” These are not hard things to say. 

Encourage exploration. Treat a talker like a voice. Do not take it away. Do not remove it or block it. Do not put it on the teacher’s desk to be used later or when it’s appropriate. You cannot do this with speech, and so you cannot do this with a talker. Exploration is wonderful. Exploration is learning. Exploration is ownership. There’s a million reasons for children to babble and stim and enjoy their systems. They could be learning the locations of words — how else will they find them, especially if they are not yet reading and spelling. They could be playing with sound and exploring words and language, just as young ones do when first learning how their mouths can make different shapes and noises. They could be engaging in self-talk. They could just be having fun with sound, and that’s fine too. They have a right to autonomy with their AAC systems, the same autonomy that they would have with their speech, the same autonomy they should have with their bodies. 

Familiarize yourself with the language system. Adults often complain about not being able to find words or finding systems not intuitive. I’ve found the hands-down best solution is to explore the system. Find a picture book and comment on all of the pages — with the AAC system. Watch a favorite TV show or movie, one where you know all the best parts already, and do the same. Think about words you might want to use on a daily basis — search for them. It truly comes down to practice. There’s a reason so many adults tend to prefer the system they know the best… Once you’re familiar with it, it becomes easy. If you don’t have access to the system itself, see if you can get access to a low-tech version, watch videos of people using it online… Give yourself time and grace to learn something new, but keep learning it. 

Model, model, model. And then — start modeling. Modeling is a fancy word for saying “talk with the talker”. Don’t overthink it. When you talk, highlight one or two of the words you say on the talker. If you’re wondering what your child could be thinking, highlight one or two possibilities on the talker (“I wonder if you’re tired? Sad?”) Start with modeling just a couple words or modeling at meals or spending some 1:1 time with your student’s AAC system and their favorite toy. Yes, you can start that small. Yes, you can start by modeling 3-4 words as the opportunity arises during the day. Yes, you can start modeling by talking all about food and drink and favorite TV shows, or other likes or dislikes at the dinner table. Just don’t make it work for them or for you. Don’t make it “say this right now”. Think of your goal less about “doing it right” and more about “getting comfortable with AAC”. I’ve seen fear of being wrong all too often lead to no modeling. And I promise some modeling, modeling with mistakes, modeling slowly, all of it is better than no modeling. 

Yes, there can be more to AAC. Yes, there are other things to think about, amount of modeling and vocabulary and recasting and probably some other fancy terms. I’m not denying that. But it all starts here. Don’t overwhelm yourself with dozens of articles and stress about doing it right. This is the foundation. This is what everything else is built upon. Make this strong. Become so reliable about having the device that you feel naked the one time you forget it for 5 minutes. Get so comfortable with responding and modeling with AAC that your child or student never, never, not for one second, ever doubts how important you see their system and how valued you see their words. Everything else comes later. 

Why We Quit ABA, Part 2

For more stories, including autistic voices that must be heard, check here.

You can read part one of our story here.

When we quit ABA, it wasn’t just my daughter that quit ABA. I am a special education teacher in my fifteenth year of supporting autistic individuals. When you serve autistic students, there is a certain amount of pressure to pursue a BCBA. It’s not always formal pressure, though some districts are increasingly requiring it. It can come informally, through meetings where BCBAs discount your professional opinion or through the knowledge that parents in your communities are seeking out those initials. 

Because of that pressure, I started (and stopped) the coursework towards my BCBA twice. The first time, I made it through one class. I am not even sure if I took the final exam, or if I just took the W. The second time, I made it through three. I wanted to know the terms and the practices and the terminology that are being quoted as the best thing for my daughter and my students. I wanted to read the research for myself. 

I still quit. Two different programs. Permanently.

There are tools that are used within ABA that many really good teachers use — and probably used long before Skinner ever came along. For example, breaking things down into smaller pieces can be really helpful in determining where a learning breakdown is happening. Or “shaping”, where we celebrate kids’ good attempts at something long before they are perfect.

But I found that it was impossible to separate these tools from the culture. It was impossible to separate task analysis from a heavy reliance on physical prompting. It was impossible to separate shaping from an emphasis on verbal communication. It was impossible to ignore the research that included forced feeding programs, elimination of vocal stims, or provision of limited communication systems to students. It was heart-wrenching to be in classes with professors and people who likely thought the JRC was a good thing. It was impossible to ever choose presence with students over quantitative data. It was impossible to ignore the compliance-oriented research and strategies.

And it is pervasive. This harmful, harmful idea that autistic students cannot learn outside of this one way is pervasive.There is plenty of behavior modification talk in special education programs. There are still plenty of special education textbooks that write about discrete trial as the way to teach literacyThis pervasiveness is why I write — not just about quitting, but everything I write. To break down these harmful ways of thinking and teaching. To do better.

Three semesters of coursework on ABA specifically with autistic students, and how many times did I read about autism from the words of autistic people? Zero.

Three semesters and how much did we learn about AAC? One week, and limited to PECS.

Three semesters and how much did we talk about accommodating sensory needs? Zero.

These things are important to me. These things are what make me the teacher I am today. These are the things that I want my child’s teachers to know — what her experience of the world is like, how to support her communication, how to meet her sensory needs. These things are what make my classroom successful and my students happy to be there. 

This is why I write so much about the culture of our classrooms, because that’s what comes first. We need to know who we are as teachers, who we want to be.

I want to be a teacher who explores concepts with my students. I want to be a teacher that expands their schema and understanding of the world. I want them to learn about mud puddles and the way friction slows a ball going down a ramp. I want to immerse them in literature and letters and writing. I want my students to build deep understandings of number sense. I want their vocabulary to be built through rich sensory experiences, not time at the table, not pictures. I want them to fall in love with learning. 

These things are not easily measured. I won’t be able to create a list of 1,000 pictures that my students can name when asked (and I’m okay with that). These things are not taught by reading sight words or repeating math facts until we reach a set level of fluency. But these are the things I want to spend my time and money studying. I want to study how I can be a better communication partner to my students. I want to study what a literacy block can look like for my emergent literacy students, what accommodations and strategies will help them when they enter elementary school. I want to experiment with what sinks, what floats, and why we think that happens. I want to make messes. I want my time to be so fully immersed in being with my students, not in sitting behind a desk and graphing. 

I want to be a teacher who gives my students an education

It’s not easy to quit ABA. I mean, it’s super easy to quit in that my classes were against everything I stand for and frequently made me shake my fist at the sky. But it’s not easy to take the leap against something the whole world pushes. There is a fear that one day, I will no longer be allowed to teach my students. There is a fear that families will think our classroom is not good enough. 

I have thought long and hard about how I would respond to this fear. I believe in my students. I believe they are smart and capable and funny and talented. I believe that they have the same right to a full, well-rounded education as any other person that walks through the doors of school. Because, I promise you, if you give us the chance, you will not regret it. 

My Teaching Goal (Spoiler: It’s not Fixing!)

a set of neon shapes in a neat line on a couch cushionEarlier today, I was looking through one of the many assessment tools that are available to me, and trying to decide what’s useful, what’s not, and how it will feed into instruction. One of the warnings on this tool, and many others, is that using different materials or question phrasing invalidates the standardization process.

Except, outside of eligibility where I begrudgingly complete standardized assessments, I don’t care.

A training I recently attended said that children who can do something with family but not under a standardized test condition may have the knowledge, but should still target the skill due to the “performance problem”.

Except, to me, it’s only a “performance problem” if the student in front of me sees it as such, if they believe their difficulty accessing this knowledge is interfering with their goals and quality of life. Even then, I look at accommodations before re-teaching. Otherwise — if it is just a matter of “I can’t show my skills in these test conditions”, it’s okay. If you can name a bunch of farm animals when playing with toys or singing with mom, but not during a standardized test? That’s fine. I’m going to write that you know your (farm animals, letters, addition, etc).

Because here’s the thing — I don’t see my job as fixing children. I think my students are harmed if the primary focus of education is to bring their curve or scores closer to a normative one. It’s also simply not possible for many students, at least not without the terrible toll that comes with masking.

This doesn’t mean presuming incompetence.

This doesn’t mean babysitting.

This doesn’t mean not doing anything.

We hold high expectations and believe in the capability, value, and leadership potential in every single student that enters our classroom. We teach to those high expectations. We look for alternate ways to capture that learning.

I see my job not as fixing, but as supporting. I am here to support each student to finding and sharing their voice. I am here to support engagement through accommodations and universal design. I am here to support learning by ensuring access to the fullness of a curriculum, including real reading and writing and making sense of numbers. I am here to create a world of opportunity for every student to have the best possible life, to create, to think critically, to experiment and explore and uncover.

And students don’t have to become “normal” or “typical” to do that. In fact, our world is made richer when we see and encourage all the ways there are to create and synthesize knowledge.

So, no, I don’t care if my assessment tool is standardized or if I totally skip any and all goals around eye contact (*intense side eye* — why does that even still exist???). Because I don’t need to fix my students. They are already worthy and valuable and wonderful — just as they are

The right to NOT talk.

image of an iPad screen with a grid of icons for voice output. the message bar reads: "I don't want to! Grumpy"We all have times where talking is not happening. We ignore questions. We don’t answer the phone. We flat out tell others that we don’t want to talk. Some of us have times where we simply cannot talk; I’ve had many conversations with my husband via text message. At other times, we may want to talk — just not about the subject at hand. Our partner may ask if we want hamburgers or grilled cheese for dinner, but we answer with complaints about something that happened earlier during work.

Yet, this is forgotten or completely thrown out the window when it comes to the students that we serve (and children, generally, in our compliance-driven society).

We ask students what they want (often within limits). If they begin talking about something else, then we take it as proof that they weren’t listening, that they don’t understand, or that they don’t have the ability to answer. They talk about Diego, because it’s their all-time favorite, and we say they “perseverate” or “only know one word”. They don’t use their talker on demand, and it’s written off as “inappropriate” or “not being used” or “they don’t know how to do it” or “too much”.

We need to ask ourselves: what is our goal? Is our goal for students to say what we want when they want? Or is our goal for student’s to have a voice? Because a voice means they get to say what they want when they want.

A voice means being able to talk about your passions, whether they are Diego or the alphabet or worms. A voice means being able to change the topic, interrupt, or ask for something that wasn’t on the menu.

A voice also means being able to NOT talk.

It means that I don’t have to answer your questions  — not when you want me to, and maybe not at all.

It means that I can go hours without talking, or days, or whatever, because it’s my voice and I can use it when and how I want it. I can be silent, and I won’t have people then try to take my voice away.

Autonomy isn’t autonomy if it’s only allowed at the convenience of adults and professionals in students’ lives. A voice isn’t a voice unless we grant the full range of freedom — freedom to use, but freedom to not use as well.

Silence is okay.

Silence doesn’t mean “doesn’t know”.

Silence doesn’t mean “doesn’t need”.

Silence certainly doesn’t mean “take my voice from me”.

Silence is just that — silence. And everyone has the right to it.

Dear teachers, we can do better.

I have had some heart-breaking meetings and phone calls with families. They almost always involve sharing experiences that they find normal, but completely wrench me open.

Example: Families surprised by compliments and celebrations of their child.

Oh, teachers and staff members, think about what you say before you say it. Think about what message you are giving to the children you serve when criticism is followed by criticism by another criticism. Please, please, please start sharing more of the good with families. Even more important: start sharing it with your students. No one should ever be surprised that there is good news. It can be small, it can be big, it can be anything, but it’s there. Tell them about the gifts and talents you see, about their hard work, about the gains they make each week. And I promise: every single child has them. Every single one.

Example: Families surprised by staff who speak directly to their child.

When you meet a child for the first time, say hello to them. When you ask “how are you?” and “what do you like?”, say it too them. Do they use an alternative communication system? You can still speak to them. Do they not have a communication system yet? You can still speak to them. How hard is it to say, “Good morning! I hope that you had a wonderful weekend!” directly to a child? It’s not. How hard is it to say, “You seem so sad. I’m sorry you’re having a hard time” directly to a child? It’s not. Do it.

Example: Families excited by discovering that all kids participate in class photographs, graduation, school plays, field days, music concerts, or electives. 

This is their school too. Special education students are not guests. They are community members. It shouldn’t be a fight to gain access to these things. They should be so automatic that no one would ever think of it being any other way. I get that there is a spectrum of options, that least restrictive environment means a lot of things. I have a son that has advocated for himself to have more or less time in a self-contained environment over the years. But his school has always, always ensured that he was in every PTA concert, that he was in every field day, that his picture was always with his general education classmates in the yearbook, that he was seen as a member of that community. When life was hard, that sense of belonging meant everything to him (and to us). It matters. Oh, how it matters.

Folx — these things should be foundational to our practice. These shouldn’t be things that families move across districts and states to find. These aren’t things that are hard to do, but they mean everything. They mean everything to the students we teach, who deserve respect and access to a robust education. They mean everything to their families, who need to see all that is possible. And they can mean everything for us, as we see our practice, our schools, and our communities transform to become places where all children are seen, welcomed, and celebrated.

We can do better.

Behavior as a Stress Reaction

image of a child completely tucked into an orange body sock, no head or arm or leg visible.
student response to looking at their daily schedule

Summer is coming to an end, which means that all of my preschool babies are getting tired. It’s a long school year when you’re 3 or 4 years old. They are so absolutely ready to swim and splash and have their days in the sun. Add transitions and life events and medical issues, and there’s been some visible signs of stress showing up in our day-to-day routines. Work avoidance. Difficulty sharing. Words that won’t come out right. And a million other little ways that they say: “I am done. D. O. N. E. Done.”

I myself have been under a larger amount of stress than is typical this year. I’ve been sick. I’ve had surgery. I’ve had a larger caseload than typical. Graduate school. Financial stress due to those medical bills and graduate school. One child leaving elementary school, one child in her last year of middle school.

My family sees the impacts.

Conversations of more than 3-4 exchanges — not happening. It’s not just that I cannot participate, but I don’t even want to be around them. It’s too much at once. I have reverted to having the vast majority of my longer conversations with my husband via text message, even when we are in the same room. Sensory input that I could typically ignore, like someone patting their legs or singing under their breath sounds like it’s on volume 200. I’ve eaten the same food for dinner for 4-5 nights in a row. My screen time? Way up!

There’s a couple of take-aways… It would be really easy to see me walking away from a conversation or asking people to stop talking as being mean or rude. At best, someone might think I’m lacking some skill or another. Maybe they would see my screen time use and think that I’m a disengaged parent. Basically: there’s a lot of judgements that people could make, and none of them would be right.

Because — none of the above. It’s a stress response. My tank is full. My tank is over-filling. All the neurons and skills that I had for coping with life’s bumps (such as too much sensory input) in more “acceptable” ways are gone. And so I revert to this. Younger children or people under more stress may revert to other things: hitting, screaming, scratching, falling on the floor, and so on.

The other piece: this happens at home. It doesn’t happen during my school day. It doesn’t happen when I’m in a super important meeting with a parent. It happens at home. That doesn’t mean that I’m “doing it on purpose” or that I could just pull it together. And how many times have we thought or said something like that? But the space we have for coping skills is always in flux, sometimes more, sometimes less. And sometimes we choose to use up more of our skills in one place, knowing our safe place will be there for us when our tank is empty.

I get that this is easy to forget. It’s not exactly something our culture prioritizes. But doesn’t it make all the difference?

I think of a student who may disembark the bus screaming. If we focus on “quiet mouth” (ugh!), what do we miss? What if they’re simply hungry and have no way to tell us? What about the student who falls on the floor every time someone comes near them? Do we just enter their space anyways? What if their sensory system is so on fire that the possibility of any sort of imminent touch is sending signals of pain through their body? We are so much better able to support these students if we look to minimize their stressors and support their over-flowing systems.

It comes down to this — can we just remember that our kids are doing the best that they can? Because I think that would change everything else we do, from the tones that we use to the plans that we make.

My own safe space is home. I see in my family the kind of classroom that I want to have. I see in my husband the kind of teacher that I want to be.

Flexible.

Kind.

Accommodating.

And always, always recognizing that I am doing my best.

Can’t we give our kids that same benefit of the doubt?

Things We Can Retire: “Developmental age”

First and foremost, let’s remember that words matter. It’s not semantics. Words set the foundation for how people view our children. They create a framework of expectations and support services. They need to be carefully chosen, words selected to affirm and uplift individual’s humanity and right to respect. It’s why we don’t use the r-word and why the autistic community chooses identity-first language. Words matter.

One of the phrases that has been popping up in my life a lot recently has been “developmental age” — as in “my child is developmentally X months / years old”. It’s usually an age significantly below their chronological one. Other versions are “caring for my child is like caring for an infant” or “my child is really a toddler”.

Oh, parents and teachers, can we please agree to stop this? It’s not helpful, at best, and limiting at its worst. And inaccurate — so, so inaccurate.

It’s not helpful. After all, what does “developmentally two” even tell us? I see this pop up in lots of groups when asking for advice — “My student is developmentally two, what do I do about (AAC / work activity / behavior)?” Except that hasn’t really told us anything… What does the student like? Dislike? What assistive technology are they already accessing? What are their visual and sensory support needs? What comes easily for them? What is more challenging? Our evaluations, our present levels of performance, our conversations about our kids all need to get a lot more specific (at least in private… I understand keeping things pretty generic in public forums).

It’s inaccurate AND limiting. Here’s the bottom line: we don’t know what these students know. The students who have these phrases thrown around about them are the students who are the most challenging to accurately assess. They may have complex communication needs, significant apraxia, difficulties with sensory regulation, all of the above, or something else entirely. At best, our assessments may tell us the minimum that they know. For example, if a student shows that they can identify 5 letters, we now know they can identify at least 5 letters. We don’t know that they don’t have the knowledge of the other 21 letters. There are dozens of reasons why they may not have been able to demonstrate their knowledge. This is especially important for professionals, who need to be clear about the limitations of these assessments instead of presenting them as the end-all, be-all. When we use these tools to set up boxes like “developmentally two”, then we create preconceptions and limit access. We limit access to real literacy instruction, because “two year olds can’t learn to read yet”! They’re “not ready”! We limit access to general education classes and peers. We have medical professionals that won’t hear a child’s complaints about pain, because it’s written off due to their “developmental age”. We limit their exploration of new activities and adventures, whether it’s a 10th grade science experiment or going to a Nicki Minaj concert. We cannot keep doing this to our students. They deserve access to the entire world, to all the things that every other child and adult access.

It’s not respectful. Oh, friends, think about this deeply… Would you want someone to refer to you as an infant, toddler, child, a pre-teen, long after you left those years? I personally love to watch Hannah Montana and Lizzie McGuire. I saw Moana and Frozen in theaters multiple times. There have been plenty of times that I needed help with a zipper or a fastener or a total meltdown. I need reminders that it’s time to take a shower. One of my favorite ways to calm my body is to swing on the playground. It is an almost irresistible temptation to be next to the swings every day on the playground, actually. But, because I can speak, because I can demonstrate academic knowledge in a way the world has deemed acceptable, no one would think to call me a child. Our kids deserve the same respect. They can like what they like. They can need what they need. That doesn’t change the need for respect; our language needs to reflect that respect. Our kids’ age is simply their age. A teen is a teen is a teen.

We’ve lived this in our family. We’ve lived our 3rd grade daughter being taught Pete The Cat for the fifth or sixth year in a row, because her school team limited her. Or when she changed schools and they decided that clipping clothespins onto a box was even better, because she was a “pre-learner” (another version of developmental age, except somehow even worse). We’ve lived people thinking she shouldn’t say she hates school or us, because OMG, she’s such a precious sweet angel, a toddler in a taller body. We’ve also lived her pain and frustration  (and boredom!) over it. Indeed –it’s amazing how much more engaged and chatty — how much happier — she became with professionals that saw her, just her, no limits, no ages, no prerequisites required. Her current teacher talks about ecosystems and the solar system and the American revolution. Her occupational therapist celebrates her interests while challenging her and targeting written expression and continually raising the bar. Her vision therapist tried hard to convince her school team to work on literacy and number skills. These are the people who get to see all of her, who fall in love with her, who get her. I want more of those people.

So, yes, let’s retire this phrase. Let’s do better by the children and adults that we so deeply love and care for. Teachers and other professionals need to especially listen up, because we set the tone for speaking about disability at every eligibility or well-child check-up. We are why parents use these words. They hear them over and over over, from doctors and psychologists and school evaluation teams. They are cemented. We are the ones who are creating these artificial limits, making parents think that literacy and number sense and autonomous communication are pipe dreams. Except they are only pipe dreams when we don’t provide the services (due to the false limits we’ve set). See the feedback loop we’ve created?

We can break the loop. We can lead the change. It starts with our language, and continues with our practice. Let’s not limit kids with our words, and let’s not limit them with their access. We can do better. Let’s do it.