Tuesday, December 31, 2019

I Identify As Tired

Hannah Gadsby in the Netflix special Nanette
[image: Australian comic Hannah Gadsby, speaking into a microphone.
White text at the bottom of the image reads, "I identify… as tired."]
Emily Paige Ballou
chavisory.wordpress.com

I started wondering something explicitly for the first time recently (I don’t even entirely remember why), and that is: How many autistic kids who fly under the radar for years, or forever, present primarily to non-autistic observers as exhausted?

I was wondering this as I was recovering from the end of a production a while back, and my main problem was just that I was so exhausted. If I got up at 10:00 AM, I needed a nap by 4:00 or 5:00, and not for having done all that much in my waking hours. I couldn’t exercise the slightest amount of group planning ability outside of work. It took my writing brain a couple of months to even think about coming back online. Transitions of any kind, never a picnic, became the worst.

But mostly I was just so tired.

And as I look back on being a kid, obviously there was so much that I just had no frame of reference to explain, but one of the things that was apparent, even to me, even when I was really little, was that other people didn’t think I should be as tired as I was. In grade school I was too tired to talk to a friend on the bus ride home instead of just staring out the window at the sunlight flickering in the trees. In middle and high school (on the afternoons I got to come home), I needed a two-hour nap before I could regroup and start thinking about dinner and homework, and people just didn’t believe I was too thrashed from a day of school to do much of anything else before that happened.

At least twice, I remember being made fun of by older camp counselors for asking to be allowed to go to sleep in my own bed on the last night of camp instead of to an all-night dance party or lock-in, either because I knew I would need the energy the next day, or was just so tired I wanted to cry.

While there were things that I couldn’t do at all and had no way to justify why, a fair amount of the time, it wasn’t that I just flatly couldn’t. It was that I could do what was demanded by school or social activities, or at least perform a superficial but apparently somewhat convincing pantomime thereof, for a relatively limited amount of time, and it took absolutely everything out of me to function that way until I couldn’t anymore, and then people didn’t understand why I couldn’t anymore.

And sometimes it was actually that something more specific was the actual problem, like having trouble transitioning, or not having the verbal bandwidth or social knowledge, or having motor planning trouble. But I didn’t have words for any of that, and the closest approximation I had available was often “I’m too tired.”

“Why?”

“I don’t know.”

I mean, I didn’t.

I’m more embarrassed of it now than I was when I just didn’t know that I shouldn’t be that tired, and what the reason was. It’s one of the probably top three things I feel like I have to hide, in terms of being autistic and doing what I do for a living.

That me sitting here having a conversation in a way that reads as baseline normal to you is so high-energy that I’m going to start to break down from it in about half the time as you and have to go home and collapse. That to you that’s just how humans work and to me it’s like performing an extremely high-level game of mental and physical coordination.

That there are a lot of things I’d like to accomplish but I flatly don’t have the energy.

That when people suggest I do things like go to grad school or run for office, it is hard to admit, “Okay, do you know how much of my available energy I am currently using just to hold my life together to the extent that I am right now?”

All of it. It’s all of it. I’m not just skating here.

And that’s not even from masking or passing or pretending not to be autistic. That’s just getting the stuff done that I have to get done.

That what you are talking about is so far beyond my capacity to think in extremely abstract ways and be on the hook to communicate about for that much of the day and do high-level strategic planning/networking and also do the work of holding my life together. And also write papers?

Why don’t I run for office? Why don’t I teach college? Because I can’t actually speak for more than about two cumulative hours per day, and it helps if even all of that time isn’t consecutive; why don’t you become an astronaut if that’s what you really want? Oh, what’s that? You don’t have the resources, either internal or external, to go back to school for a terminal degree in math or physics or astronomy followed by years and years of physical conditioning?

Okay. That’s close to the energy differential we’re talking about here.

“Twice exceptionality: When your test scores write checks your actual abilities can’t cash,” is how a friend put it once.

There’s a presentation of autistic reaction to unmanageable demands that’s been called Pathological Demand Avoidance, and while I have a lot of problems with its framing, I think it may be “real” insofar as being a recognizable pattern of coping strategy in the form of exhibiting disproportionate, preemptive or protective defiance to what seem like normal, commonplace demands to a non-disabled adult.

I think there might be another one in which autistic kids, no matter what they’re feeling, try and try and try and try and try to meet adult demands to the point where they wear themselves out trying, or get fed up with the Kafkaesque paradox wherein no matter how well they manage, the outcome is even heavier demand on their limited abilities to manage.

I wonder, in light of admittedly anecdotal personal experience, how many autistic kids—not that they don’t show other signs, but which might be misattributed or considered “quirks” or misbehavior—primarily have it noticed that they are so frequently so tired, and there’s not an obvious physical reason why?

To the next person who says to me “How are you really disabled?” or “I don’t see how you’re autistic,” I’m going to be hard-pressed not to reply “I am so goddamned tired.”

Wednesday, December 18, 2019

How Finding Autistic Community Leads to Self-Acceptance

David Gray-Hammond, photo courtesy author
[image: A white man with short brown hair, a beard, and
glasses. He is wearing a teal shirt and light brown pants.]
David Gray-Hammond
@emgntdivergence

Developing skills in self-advocacy can often seem confusing and frustrating. It requires us to be aware of our needs in a detailed way, while also being able to communicate them in a world that so often seeks to silence us. I have always argued that self-acceptance is the first step to self-advocacy, but in order to accept ourselves, we must first know ourselves.

When I found the autistic community, I found thousands of people who understood my experience in a way that others simply could not. It was in this understanding that they taught me the vocabulary that I needed to describe my strengths and struggles (in fact, I did not even know the words to describe my most basic autistic behaviours, such as ‘stimming’). Truth be told, after diagnosis at the age of 26 I was largely left on my own, not knowing any other autistic people, and not even understanding my own behaviours. I find myself ashamed to admit that I started to get sucked in by cure talk (not quack cures, in my mind there would one day be an answer from REAL science).

One of my first introductions to the autistic community was a website known as Autistic Not Weird run by the wonderful Chris Bonello. Between his articles and the Facebook page of the same name, I was able to start to learn about what it meant to be autistic. Chris created an environment online where autistics and their neurotypical counterparts could learn about autism and celebrate it. I also discovered the work of Sara Harvey, also known as Agony Autie. Sara’s What’s That? Series on YouTube was vital in giving me the language I needed to describe my autistic behaviours. This was crucial; prior to this I had spent my life believing that I was completely alone in my behavioural experiences, doomed to forever be an outcast.

The more time I spent in the autistic community, the more I felt my own internalised ableism slip away. As I learned about my neurology, I learned to love myself for who I was, this self-acceptance has slowly led me towards a place where I have been able to advocate for my own needs. These days I am proud to stand against cure rhetoric, fully accepting of my own mind. Of course these days I face the people who tell me that I should not label myself, or define myself by my diagnosis. To those who say that diagnoses and labels are bad, I ask you this; How can a person accept themselves if the do not know who they are? Yes, I am defined by my diagnosis, and I was defined by it before I was diagnosed formally. Being autistic is an inseparable part of my neurology, without my autistic brain, I would not be the person I am.

By meeting those who supported me to be myself, I learned to accept myself. Learning about autistic acceptance is to learn of self-acceptance for the autistic mind. A prime example of the importance of the autistic community for me, was when I attended my local autistic pride picnic for the first time. I was able to be around other autistic people, celebrating a growing culture of acceptance. I was also lucky enough to meet Emma Dalmayne, a huge player in the world of autistic rights advocacy. People like Emma have shown me that not only are we a proud group of people, but we will defend ourselves and those like us fiercely, standing up for what is right, and standing against the abuse of quack cures and therapies.

In a perfect world, all those on a path to diagnosis, or who have received diagnosis, would be directed to the autistic community. Unfortunately, autism professionals still have a lot of work to do when it comes to listening to autistic voices. Until that time the community at large must make itself as visible as possible, such that all who need us can find us.

There is no shame in admitting that we have previously existed in a lack of knowledge, but it is vital that those of us who have found the knowledge of self-acceptance pass it forward, making the world a better place for all autistics and those to come after us. We owe it to the next generation to show them that the world has a place for them, and that in this place they will always be welcome. All autistics deserve to accept themselves for who they are.

Wednesday, December 4, 2019

An Inclusionist's Manifesto

1
Photo © Mundial Perspectives | Flickr / Creative Commons
[image: A white teacher with shoulder-length straight dark brown hair holding
up a globe to a group of young students of varied races, several of whom are
raising their hands, all of whom are seen from behind.]

Tim Villegas
www.thinkinclusive.us

I spend a lot of time thinking about inclusion.

Most of this energy is spent coming up with ways to explain inclusive education clearly and succinctly so that everyone understands what it is and why it is essential. Because, to me, it is one of the most crucial things we can do for students (disabled or non-disabled).

Here's the challenge. You probably already have thoughts and opinions about inclusion. Maybe you have already decided that the cognitive difficulties or level of autism your child has, would not be appropriate in a general education classroom. Perhaps you have a notion that inclusion is good, but you don't know what it looks like or how to even advocate for it. Or conceivably, you are all-in for inclusive education and want your child in general education 100% of the time, all day every day. In all of these scenarios, we need to take a step back and see the larger picture of how inclusive education fits in our educational system.

When I started as a special education teacher in 2003, I worked in what was called a "Special Day Class." In Pasadena, California, with the majestic San Gabriel Mountains outside my window, I taught my heart out for my 4th, 5th, and 6th-grade students with labels of "moderate to severe" autism.

Back then, my students would spend the entire day in the classroom following a strict routine that I created for them. Moving from station to station, my pupils would learn a modified curriculum. When they finished, they would earn a reward (i.e., playing with a toy, listening to music, or eating a piece of candy).

I felt like we were doing good work. We cared about the students and learned to love their unique interests and quirks. We would start each day reading the local newspaper, taking each section out, and prompting the students to either read the headlines or identify the images.

"Who won the Laker game last night?" I would say, pointing to the box score. Jasper, a student who could read practically anything I put in front of him, bellowed the score, "Los Angeles Lakers 101, Chicago Bulls 94!" Welling up with pride, Mr. A (my paraprofessional) and I gave each other a high-five. "That's right! Kobe is looking good this year."

After newspaper time, we would transition to "circle time." This consisted of reviewing the calendar, days of the week, months of the year, the weather forecast, and singing Roy G. Biv (a song about the colors of the rainbow) complete with the strumming of my guitar.

Following "circle," my students went to check their schedule. Each of my kiddos had an individualized schedule that displayed picture icons designating where they should go. They would grab the image (paired with a word) and then move to the corresponding area of the classroom (i.e., Math, Reading, Play, Computer, Independent Work). I spent hours setting up the initial schedules so that it all ran like a scripted play.

This structure worked for the most part, and the times my students struggled, it typically centered around communication issues. They wanted something, and I either didn't understand what they wanted, or it wasn't available at the time, which caused frustration and often meltdowns or aggression.

I was still going to school at the time because, in California, you could be hired as a special education teacher with a provisional teaching certificate. My teaching program promoted inclusive practices. This meant that it covered models like co-teaching (where special and general education teachers work in the same classroom), collaborating with general education teachers, and strategies for including students with autism (or other low-incidence disabilities) in general education classrooms.

I distinctly remember having a heated discussion with a professor in my program about how they just didn't understand that students with autism needed to be educated with other autistics. "But my students need to be taught routine! How will they learn that in a general education classroom? They can't do the same things everyone else can!"

Instead of debating our differences in philosophy, my professor gave us an assignment. Pick one student who is educated in a self-contained (segregated) classroom and create an inclusion plan.
"And don't pick an easy one, pick a student that you never would think could ever tolerate time in a general education classroom," she said.

I had the perfect one.

Nathan* was a 5th-grade student who had limited verbal abilities and engaged in self-injurious behavior. His verbal stimming was extremely disruptive, and when he got angry would often hit or kick anyone or anything next to him. I never in my wildest dreams thought that he would be successful in a setting with typically developing peers.

I was wrong.

The plan included examining the student's interests, communication skills, and adaptive strengths.

The idea was to discover who Nathan really was, what he liked, and what he was good at.

Next, the plan included planning with a general education teacher a lesson that would take into consideration Nathan's strengths.

Despite all of Nathan's communication and sensory issues, he was a wizard with scissors. In fact, that was one of his favorite things to do. If he wasn't cutting strips of paper or cardboard, he was shredding paper with his hands. Picking up leaves outside and crumpling them in front of his eyes so that he could see the minute pieces fall to the ground was one of his favorite things to do.

The plan began to form. Whatever we were going to do, it would involve cutting.

After a few more planning sessions, the day finally came. It was time for Nathan and me to walk down the long hallway to the classroom for science class. The activity was to create a topography map out of cardboard.

Luckily for Nathan, there was a whole bunch of cardboard to be cut for this activity. As he sat in a desk in a classroom with 35 of his peers, I was astounded at how calm and focused he was cutting to his heart's content.

His task was meaningful, age-appropriate, and for 45 minutes in that science class, he belonged.

Did that one activity set Nathan on a path of full inclusion? No. But what it did do was set me on a way of believing that any student could be successful when certain conditions were present.

Nathan was a turning point for me, and I looked for more ways to include my students in my school.

The other teachers in the school, as well as my paraprofessional, saw the success and bought into my vision. It was like a religious conversion, and I had been baptized in the church of inclusion. That is how I feel when I am talking to people about why inclusion matters. Over the years, I have become an evangelist of sorts.

But this experience wasn't enough for the educators at my school or for me. My students were still segregated despite my efforts to increase their time with their peers. Joining their typical peers in recess and lunch, going to assemblies, and the occasional visit to a general education classroom didn't seem like enough. I wanted to know why I couldn't include all of my students all the time.

I came to work with the cognitive dissonance that I was doing what I loved, but just in the wrong location (a segregated classroom). But then I realized that I wasn't thinking big enough. Through talking to other teachers who were passionate about inclusion, another vision of inclusive education began to form.

Inclusion is not about physical proximity. It is about planning for the success of all students.

Full inclusion doesn't mean students with disabilities (significant or otherwise) should spend 100% of the time in a general education classroom.

If this sentiment is offensive, then inclusion advocates, like me, have done a poor job communicating what inclusion is really about.

Full inclusion is better understood as a mindset and framework for educating students with and without disabilities.

The idea that "we learn better together" is not a new concept. In fact, it is a notion that has been in the refining of academic and peer-reviewed studies for over 30 years1.

Consider that there are multiple examples of authentic and thoughtful inclusive education around the United States, Canada, and other parts of the world2. You may have seen inclusion fail with your own eyes. Or you think inclusion only works for specific students. Alternately, you believe that time spent in general education is the most substantial measure of whether a school is inclusive.

Inclusion doesn't exist without a mindset that every student in a classroom, school, or district belongs.

Full and authentic inclusion means total membership in a community. The percentage of time spent with typical peers is only one of several quality indicators3 of an inclusive education program. There is no guarantee that because your child is present in a classroom with non-disabled students, it means they are included.

Full inclusion is going to look different in every school and every classroom and for every student.

What is non-negotiable when it comes to inclusion is the expectation and desire that everyone belongs (and learns) together.

As prominent inclusive education advocate Lou Brown4 states:
"It is unacceptable for students with significant disabilities to spend 0% of their time in general education classrooms. While better, it is also unacceptable for them to spend all of their time therein. Self-contained regular and self-contained special education are both rejected because each extreme disallows important experiences and opportunities. The preference here is that they are based in general education classrooms in which they would be based in they were not disabled. Then, the individually meaningful amounts of time each need to spend elsewhere should be arranged."
The abysmal fact is that 17 percent5 of students with any disability spend all or most of their days segregated. Having students removed from their typical peers and general education classroom should be a rare occurrence. Today, the practice is widespread.

We need another system. We need to have a system where special and general education teachers work collaboratively for all students.

I want to bring back a word in the vernacular of the inclusive education movement. In 1997, Ellen Brantlinger6 from Indiana University first used the term “inclusionist.” She defines the word as those “who oppose pull-out instruction, questions the status quo of special education, and sees a need for an overhaul of the system or discontinuation of special education as a separate system." Rarely is this word ever used to describe people supportive of the inclusion movement, but that is precisely what we are. We recognize that the system is broken. Special education has never been fully funded, it promotes an "us and them" mentality, and teachers barely get any training in how to work with autistic students.

If this is striking a chord, then maybe you are an inclusionist too. Let’s get rid of special education and create one unified educational system. We are still years off from a significant restructuring of special education. But let me remind you that universal healthcare was called a pipe dream not too long ago.

Some push back that I receive about a more inclusive vision of inclusive education is that families who support any segregated environments should not get a voice. I disagree. We must not forget the families and individuals with disabilities who prefer separate spaces or classes. If we are not listening to the people, we are supposedly advocating for what exactly are we doing? You don't think we can plan for the success of all students and still support small group learning and separate spaces within an inclusive model? You are not thinking creatively enough.

So, what are we supposed to do? How can we be an inclusionist in an increasingly divided educational climate? Here are a few steps that you can take as you advocate for your child.

First, communicate your vision of inclusion with your school team. Sometimes this looks like a one-page introduction about your child that you give to the team members at the IEP. Many times, the people that are at your first IEP meeting have barely met your child. State from the very beginning (and make the team put it into the meeting notes) that an inclusive education for your child is the priority. If you are further along in your journey, better late than never, just make sure it is on the record.

Next, work with your school team as collaboratively as possible, if possible. As you navigate the IEP process, it may get messy with your expectations for your child and the school team. Stay consistent with the vision that you laid out for your child, and as they grow, give them input on their own life. Do your best to build consensus in your meetings. Still, there may come to a point where hiring an attorney, advocate, or inclusion coach is necessary.

Then, understand the Least Restrictive Environment (LRE) and Special Education case law. You won't be an expert overnight but understand what IDEA says about LRE. Remember that schools make decisions based on data, and your case for inclusion is strengthened if your child is making progress toward their IEP goals and objectives. Try to avoid having too many IEP goals and objectives because it weakens the power of the data. Better to have a few sharply written objectives with reliable data collection than 20 targets where a teacher is spread thin to collect accurate data.

Finally, create IEP goals and objectives that must be tracked in general education. Including typical peers in math and reading goals will ensure that data is taken in general education settings.

What can you do where you are to move inclusion forward, even if it is a small action? If a million of us take one step, that is a million steps in the right direction.

----

*Name changed for privacy purposes.

Footnotes

  1.  Research Support for Inclusive Education and SWIFT, Swift Schools (2017)
  2. A Summary of the Research Evidence on Inclusive Education, ABT Associates (2016)
  3. Quality Indicators for Inclusive Building Based Practices, Maryland Coalition for Inclusive Education (2011)
  4. How Much Time Should Students with Significant Disabilities Spend in Regular Education Classrooms and Elsewhere, Lou Brown et.al. (1996)
  5. Learning with Disabilities: One Effort to Shake Up the Classroom, NPR (2014)
  6. Brantlinger, E. (1997). Using Ideology: Cases of Nonrecognition of the Politics of Research and Practice in Special Education. Review of Educational Research, 67(4), 425-459. Retrieved from www.jstor.org/stable/1170517