Tomorrow Is Too Long to Wait for Inclusion

A Letter To My Daughter’s Teacher

letter to my daughters teacher; a pad of paper with a pen resting on it
By Ariane Zurcher

Editor’s Note: This version of the essay does not reflect the recent changes made by the author. To read the post as was intended by Ariane Zurcher please visit Emma’s Hope Book | Living Being Autistic.

My daughter, Emma will be in your class this year.  A few days ago, Emma told me she was “scared to go to new school.”  Emma loved her teachers and friends from her old school.  So I want to introduce you to her.  I cannot speak for Emma, I cannot know if everything I write here is completely accurate, but these are things that I have learned over the years, things that are specific to Emma and that may be helpful, at least that is my hope.

Sometimes Emma does not look at you when you are speaking to her, but that doesn’t mean she doesn’t hear you.  Her hearing is excellent.  She may not know how to process what you’ve said or she may not know what is expected of her.  Often if you ask Emma a question, especially if it’s a question she knows the answer to she either won’t answer or will say something nonsensical because she isn’t sure what’s expected of her or why the question has been asked.  Sometimes people get nervous and don’t know what to say, so they’ll ask, “Oh Emma, that’s a pretty dress.  What are you wearing?”  or  “What color is that?”  These are questions that aren’t being asked for any real purpose or they are testing questions.  Typically these are the kinds of questions Emma will not answer.

Change is difficult for all of us and Emma is no exception.  Having a written or picture schedule for the day and week will reduce her anxiety.  Like everyone, Emma really appreciates having a say in what happens throughout the day.  Whenever appropriate allowing her to set a timer for a one, two or five-minute warning before a change in activity will go a long way in helping her do what she needs to prepare herself.   Usually Emma will go along with any change if she’s given sufficient warning.

General Disposition:

Emma loves people.  She is gregarious.  Her fall back position is one of happiness.  She is also very sensitive.  She can tell if someone is upset, stressed or angry and can become easily overwhelmed by those feelings.

Particularly good at:

Emma is terrific at leading others.  She can be extremely persuasive and is a great negotiator.    Her negotiating skills are wonderful for math and science and her leadership skills are wonderful motivators.

LOVES:

Emma loves music, dancing, being on stage in front of an audience.  Give Em a microphone and she will sing and dance.  She loves “talent shows.”  She loves any game involving running, swimming, holding her breath under water, laughing and being silly.  She loves playing versions of “Duck, duck, goose” or as Emma would say, “Raincoat, raincoat, umbrella!”  Musical chairs is another favorite, dance parties, hide and seek, dressing up, bouncing, swinging and going to any playground.  Emma is very athletic and very girly.  She likes cooking and while she won’t eat most of what she cooks, unless they’re pancakes, she will enjoy the opportunity to cook.

Does NOT like:

Emma gets upset if she is told not to do something she has just done.  Example:  “You cannot shout!” after she has just shouted is difficult for her.  Obviously she CAN shout, she just did, with you right there watching.  Telling her she “can’t” is not true and it’s confusing.  Instead say, “You mustn’t shout.” Then in a voice that models what you’d like you can say, “Here is how you can speak instead.”  By doing that, you are helping to give her other choices.  If she is not allowed to do something, be sure to tell her what she can do as an alternative.

Academics:

Emma is fairly new to all academics.  Within the past year she has learned to form the letters of the alphabet and is now reading, writing and typing at a 1st – 2nd grade level, likewise with math.   Emma loves the Hubble Imax movie and her favorite museum is the American Natural History Museum.  She is showing interest in learning about our world, the ocean, the moon, other planets and the universe.  She told me last night that she doesn’t want to be an astronaut though, she said she wanted to be a “singer on the stage!”

Needs extra help:

Emma resists academics.  They are hard for her and she becomes upset when she makes a mistake.  She doesn’t like getting anything wrong.  But if you help her succeed, she will flourish.  If she is reading and doesn’t know a word, give it 15 seconds or so to see if she can work it out on her own, (don’t say “sound it out” or “try again” because she didn’t learn to read phonetically and while she is able to sound some words out on her own, it won’t help her with all those exceptions like limb and thought.)   Emma has a strong desire to learn and an even stronger desire to do things independently.  With your help, she can and will succeed.

Frustration and Signs to watch for:

Emma gets a look of panic on her face.  She may begin breathing with short sharp intakes and she will often talk to herself in a high-pitched questioning voice laced with anxiety. When Emma is overwhelmed she may shut down and withdraw.  She may begin scripting, using set phrases she’s heard. Those scripts may be in context with what’s going on or their connection may not be clear to you, but that doesn’t mean there is no connection, it just means you don’t understand or know what it is.  Emma often has trouble processing her feelings and the feelings of others.  Sometimes she needs help identifying those feelings, just as we all do.  Sometimes she will start repeating things other teachers have said to her in the past in a scolding tone, such as, “No Emma!  You may not __________.  If you ____________ we will take ________________ away!”  When Emma is overwhelmed she has to rely on her scripts as all other words have left her. Try to listen even if the words seem meaningless, she is trying to communicate her feelings of distress to you.  Sometimes she might say, “You have to ask for help!”  This is what she says when she needs help, but sadly this can confuse those who do not know Emma well.  She might also say, “Do you want to go swimming?”  Which means she really, really wants to go swimming.  If you show her on the schedule when she’ll be able to go she will usually calm down.

It’s too late, the storm has hit!

This is not the time to engage in a power struggle.  Emma is not trying to manipulate you or upset anyone.  She is simply expressing her frustration in the only way she knows to.  Sometimes if she’s very upset she will bite herself or punch herself, usually on the hand or arm, sometimes if things are very bad, she will punch herself in the face.  Do not exacerbate this challenging time by raising your voice or telling her “You cannot hit!”  or “You cannot bite!”  or even “We don’t bite.”  (See Does not like paragraph above) Restraining her in an attempt to stop her will not prove helpful either.   Emma bites or hits herself because the feelings of frustration are overwhelming her.  The pain she causes herself by biting or hitting is within her control and is therefore preferable.  It things have escalated to the point where Emma is hurting herself, everyone must try to understand what has happened before things became this derailed and try to prevent them.  Sometimes it isn’t possible, but Emma is trying to cope as best she can.  When she is calmer you can work on helping her find alternate ways to cope.

What helps you when you feel overwhelmed?  What things do you do when you feel anxious, scared or upset and no longer feel you’re able to function?  Maybe the things that work for you will help Emma too.  Remember, be patient.  Showing Emma once or twice will not mean she’s learned, she will likely need to be shown numerous times.  Often there is a sensorial component to her upset.  She is overwhelmed with feelings or a sensation or too many sensations.  She may be tired or hungry, too hot, cold or thirsty.  Sometimes a sensory break will do wonders to restore her equilibrium.

Strategies that work well:

Make it into a game!  Music can be incorporated into just about any activity and can change anything.  High affect and silliness can make something that feels difficult seem fun!

Humor:

Emma loves anything silly and ridiculous.  Silly faces, silly dances, playful interactions, games!  She has specific jokes she likes to play with specific people.   Emma loves to laugh.  She loves to make up word games.  She enjoys taking a word like “uncle” and changing it to “Jungle.”  She will happily tell you that she has a “Jungle Andy and a Jungle Victor.”  Come up with silly word games and Emma will join in with glee.

Things that have a tendency to backfire?

If you say, “You have to do ________________.  If you don’t, I’m going to take __________________ away” will make her upset and anxious.  She will have a hard time concentrating because she will worry about having something she wants taken from her.  Instead say, “You can ______________, but first you need to __________________.”  That way Emma can concentrate on having/doing something she loves as opposed to taking something away.

Emma’s String:

Emma has a string that she loves.  Please do not take away her string or use it as a form of punishment.  Her string helps her focus and it makes her feel safe.  If you take it away or threaten to she will become completely overwhelmed.  Sometimes, when she is writing or typing and needs both hands to do so, you can ask her to set her string near her or in her lap.  If you allow her to control where she puts her string she will feel safe enough to concentrate and do her work.  Also (a little secret) if you get some string or ribbon and copy her movements in a playful way, you might see and feel for yourself how wonderful it can be and Emma will be delighted that someone wanted to interact with her in a way that she loves.

Food:

Emma does not have any allergies or foods she cannot eat.  However she likes to eat the same food everyday.  Some food looks, tastes and smells strange to Emma.  Please do not make her eat anything she isn’t interested in eating.  Please do not tell her she must finish something in order to have something else.  If Emma shows interest in something someone else has or is eating and it’s appropriate, do allow her to smell, lick, taste or eat it if she wants to.  And please do tell me so that I can find whatever it is and offer it to her at home too.  We will pack Emma’s lunch everyday.

One last thing:

Assume competence and respect Emma’s process.   Emma can and does learn.  She may take longer or less time than another child, but she will learn.  She is extremely independent.  Show her, help her, let her.   You are her role model.  Emma has dreams, just as we all do.  You can help her achieve those dreams by believing in her.

I am available to talk, discuss and strategize.  I am here to help in any way that I can.  Nothing is more important to me than my daughter.  Please keep in touch with me.  Please let me help in any way that I can.  There is no detail about Emma’s day that is too small.  Do not hesitate in emailing me _____________ or calling  _____________. 

 Thank you so much,

Ariane

Young girl standing in front of a classroom holding a microphone singing.

Emma performing at her old school.

 

*The above “letter” was inspired by a form letter Ann sent me by Jene Aviram© http://www.nlconcepts.com

A version of this essay was originally published at Emma’s Hope Book in 2012. 

Photo Credit: Guudmorning!/Flickr; Ariane Zurcher

Longer, Faster, Harder: Tips for Addressing Challenging Behavior in the Classroom

Longer, Faster, Harder
By Jenna Sage

I recently began training to run a half marathon. When I first decided to compete in the race, I knew very little about what it took to become a runner. As a novice, I thought that if I ran longer, faster, and harder my body would fall in line and running would become easy. I very quickly learned that there is a science to training for a big race—that training requires that you be strategic, patient, planned, and purposeful. Longer, faster, harder will only hurt you.

Many teachers have the same philosophy for addressing challenging behavior in the classroom. If a student is not following teacher directions, refusing to remain on-task for extended periods of time, calling out and being disruptive, or using inappropriate language, we follow the myth that the consequence or punishment should be longer, faster, or harder. Unfortunately, this has the same effect on students as it has on my knees. It isn’t going to lead to long-term, meaningful change.

Training Tip #1: Longer Isn’t Always Better

The first myth that exists is the idea that if I just send the student to time-out for longer periods of time, this will deter future misbehavior. Or if I use the next-door teacher’s classroom as a consequence for longer periods of time, this will eliminate maladaptive behaviors. The truth is, time-out and time-away are ONLY effective if the student wants to be doing the task he or she has been asked to do. Most students would much rather sit in the back of the classroom for ten or fifteen minutes, even if it means they can’t interact with their peers, because it also means they can avoid tackling that challenging math worksheet or reading passage. And here is the harsh reality: if a student continues to engage in the challenging behavior, time-out is most definitely not working!

So, what do we do instead? The first important thing is to determine if the student is trying to avoid or escape doing the work. The next thing is to determine if it is a matter of being able to do the work and not wanting to do it, or whether the student is not able to do the work—Won’t Do versus Can’t Do. If you have a student who is able to do the work but just doesn’t seem to want to participate, then one helpful strategy may be chunking the work so that the student is able to work for a short period of time and then take a short break. Essentially, you are providing a way to avoid the task for only short, prescribed periods of time which you control. A student could have a break card procedure, with which he or she can request to take a break or certain number of breaks from a task. Consider this: when you are working for hours grading papers or creating a fabulous lesson plan and your neck begins to ache or your dog starts barking, don’t you take a short break? That is the socially acceptable way to say, “I’m struggling and I just need a moment, “ instead of jumping straight to using behavior to avoid the task: “I’m going to misbehave so I’m forced to take a break.”

Training Tip #2: Faster Only Makes You Fall Behind

The next myth has to do with responding to misbehavior faster and faster and then more and more. Again, it is important to determine why a student is engaging in challenging behavior. If you feel like a broken record or you go home and continue to say, “Sally, no,” or, “We don’t do that in this class,” then you may be dealing with a student who is motivated by attention. For some students, the negative attention they get from you during the day may be the only attention they get. And, believe it or not, they’ll work for negative attention even more than positive. Think about your body language, the level of your voice when you are correcting behavior as opposed to recognizing good behavior. The two typically look very different. If a student is starved for attention, the angry and animated you is worth calling out in class and calling you names. If you are responding over and over to a student, two things happen. You may be inadvertently encouraging the misbehavior, and you become so focused on everything wrong that you can sometimes forget to pay attention to what the student is doing well.

The easiest solution is to change the focus of your attention. When you focus on what the student is doing well, you will encourage those appropriate behaviors. It may not be easy at first, but start looking for those milliseconds when the student is engaging in the correct behavior. Utilize Pivot Praise—this is the practice of recognizing the students who are engaging in the correct behavior and ignoring the students who are not engaging in the expected behavior. This will encourage the students to make adjustments accordingly. For example, when the class returns from the gym, you might say, “I like the way Suzy is sitting. I like the way John is sitting.” You may even notice that when you focus on the good behavior and reward what is going well, you start to feel better and more positive.

Training Tip #3: Harder Won’t Get You to the Goal

The third myth is that the harder we push our students, the more likely they are to respond positively. We know from years of research that the students who are given the harshest punishments and longest removals from school are those who likely need to be in school the most. Students who exhibit challenging behavior are most often given punishments for more subjective behaviors (campus or class disruption, defiance, disrespect) as opposed to referrals for objective violations (dress code, technology use/possession, weapons). Remember the Can’t Do versus Won’t Do: If a student lacks the skills to do the work, pushing him or her harder will only create a higher level of anxiety and disengagement. You may need to remediate the skill first. Consider creating lesson plans that include active student engagement and activities that include all of the senses. Work toward differentiating your material to include individual student needs and interests. The old adage that idle hands do the devil’s work applies in the classroom setting. Your day should include consistent routines. Students should know what is expected of them from bell to bell. The in-activity and between-activity transitions should be planned so that there is no down time. Consider having a song, a saying, a rhythm that is repeated during each transition.

Winning the Race

Just like training for a marathon, you can’t be ready for the big race overnight. You have to take time to train, to know your limits, to break old habits. You can’t change behavior overnight, either. Instead of trying for longer, faster, harder… work on training yourself to identify why a student may be engaging in challenging behavior. What are they really asking for? Students engage in challenging behavior because they are communicating a need that they don’t have the skill yet to identify and address. Take time to focus on what you want to see. Water the roses and ignore the weeds. And gently encourage students to participate in class by including their favorite topics, items, and interests into your lessons. If you stick to a good classroom management training regimen, you’ll be collecting your trophies before you know it!

Photo Credit: Kashif Haque/Flickr

Dr. Jenna SageDr. Jenna Sage is currently working as a District Administrator for Special Education.  Her position provides opportunities to facilitate IEP meetings, act as a liaison between schools and families, and ensure compliance with district, state, and federal policies.  Dr. Sage’s experiences in education have included working as a paraprofessional, substitute teacher, classroom teacher, consultant, trainer and behavior resource teacher.  She is also a Board Certified Behavior Analyst.   Her passion is providing supports and resources to school staff to ensure student success through compassionate and meaningful education.  Dr. Sage can be reached at jenna.sage@yahoo.com.

The Secret to Successful Inclusion (it has nothing to do with the student)

The Secret to Inclusion

Photo Credit: Karen/Flickr

By Lisa Berghoff

I have sat in on so many IEP meetings over the past nineteen years… too many to count, actually.  Most of the time, the IEP team becomes greatly energized at the point of the meetings when the students share their progress from the school year, and their hopes and dreams for the following year and beyond.  The team members sit and anxiously hang on every word as the students communicate, in their own ways, where they see themselves headed in the future.  You can almost see the wheels turning as parents, private providers, and school personnel try to make connections for the students so we can set them up for a successful, challenging, and interesting experience with their typically developing peers.

The adults in the room typically begin to ask questions such as “What do you like to do in your free time?” and “Is there a subject you like best?” and even “Is there a time of day when you feel you do best in school?”  The team is frantically trying to think of the most natural class fit for this particular student.  They are picturing the student learning about a subject that he or she loves, surrounded by typical peers who are potential friends.  Isn’t that, after all, the true vision of inclusion?

However, as I sit in the IEP meetings, I am going through my mental Rolodex of amazing teachers whom I consider collaborators, innovators, community builders, and if we’re really being honest here… friends.

I am not suggesting that parents and private providers try to find out who their child’s teacher is meeting for coffee before school.   What I am suggesting is that more often than not, the key to successful inclusion may have more to do with the relationship between the teachers than the subject matter, time of day, or makeup of the class.

Find Teachers Who Already Have A Good Relationship

In my experience, when teachers have a friendly relationship, it can be a win-win for everyone.  Teachers and service providers who have a positive working relationship are more likely to communicate frequently and be open and honest with one another about how best to set up the student for success.  They are more likely to ask for and accept feedback from one another about what strategies are or are not working for the student.  They are more willing to have each other in their classrooms without feeling threatened or defensive.

My students are used to seeing me pop in and out of their classes, and when the teacher is a friend, it is almost as if I am stopping by to see the teacher and not to observe the student.  This puts my students at ease, does not draw attention from the other students, and allows me to see how my students are doing in a more natural setting.  I’m just another friendly face coming into the class to witness the amazing things that are going on, and the teacher is only too happy to welcome me into his or her room.

Now, this is a little bit of a chicken-and-the-egg discussion, because over the years, I have found that some of my best teacher friendships began because we shared a student and had to work together to figure out a way to make things work well for everyone in the class.  We formed a bond over thinking outside the box and trying some unconventional methods, some of which failed miserably, but through that process of joint reflection and modification, our friendship was sealed.

Friends trust each other.  When students with challenging needs are placed in classrooms where the professionals share a collegial friendship, they will share information that is anecdotal, and often more beneficial than what is written on official documents.   Also, we are able to discover new ways to benefit all of our students when we find time to interact in a friendly, informal manner.

For example, a former student with autism, (I’ll call her Sally because I don’t actually think I’ve had a student named Sally in the past nineteen years), has an affinity for trains.  She enjoys talking, reading, writing stories about, and watching videos about trains.  This is well known and noted in the IEP materials.  However, as I was chatting with Sally’s math teacher on one of our “planning walks” around the building, we noticed that in one corner of one hallway, if we looked out the window in just the right way, we could actually see the train tracks across the street.  Upon this discovery, we decide to use this space for Sally when she’s struggling to engage in math class and needs a brain break.  Sally is so overjoyed by this tiny corner window that she asks a typical peer to join her.  After a few minutes of watching the tracks (and we cross our fingers that a train actually goes by) with her pal, she’s right back in class and engaging in learning.  Eventually, everyone is interested in the train track view and the other kids enjoy being chosen by Sally to accompany her.  Now, these students have a shared experience with Sally, and Sally knows that she has a positive way to refocus and be a part of the class.

I am happy to say that I have many colleagues whom I call friends and the list continues to grow as new teachers come to my building.  With many years of experience, I am very open to forming new relationships as that just opens more doors for my students and makes my job so much more enjoyable.

Committed To Student Success

So, when I am sitting in IEP meetings listening to the adults toss out suggestions for possible placements for a student, I find myself thinking about the teachers whom I consider friends.   And even though it might not be the student’s favorite subject or the most ideal time of day, I know the student is going to have a positive experience in this teacher’s class because we so enjoy working together and we share a joint passion for the student’s success. Simply put, we won’t give up.  Friends would not do that to each other.

As a parent or outside service provider, here are a few questions to raise about placement that can help steer the student into a situation where the teachers’ positive relationship could have a positive impact on the student’s experience.

1. Which teachers in the building have you worked with successfully for inclusion? 

2. Which teachers are especially skilled at welcoming students with special needs into their classroom community?

3. If subject was not a factor, which teacher would be the best fit for my child and this team?

4. How are you most likely to communicate with this teacher? 

Tell us your answers to these questions in the comments section below!
Lisa BerghoffAs a high school special education teacher for 19 years, Lisa Berghoff has worked with many students and their families to create unique learning experiences and ensure that they are an authentic part of the school community. She  is passionate about collaborating and connecting educators as a means for success for students.  She is also an ed-tech enthusiast and presenter in the Chicago area.  Connect with Lisa on Twitter @LisaBerghoff.

Why Isn’t Accommodating the Same as Inclusion?

Why Isn’t Accommodating the Same as Inclusion?

I am fortunate that the students in my school provide the opportunity for me to revisit my commitment to inclusion over and over again. Each time I work with students, teachers and families to ensure that every child is fully included in a class, program or experience, I have the unique opportunity to stretch my own boundaries as I reflect on the evolving nature of true inclusion.

More than anything else, I have learned that simply accommodating a student’s needs is not inclusion.  Don’t get me wrong, making appropriate accommodations is an essential strategy in working with students who have a wide variety of needs.  But there’s more to inclusion than that.

Let me give you an example:

A teacher divides a class into study groups.  A written copy of the text is given to each student in the group. The teacher decides that since this is a discussion-based activity, the text can be read aloud to a student who is blind and he/she can still fully participate.

What’s wrong with this?

Put yourself in the scenario. Are you typically the one who says (when something is read aloud), “Let me see that, I missed half of what you said.”?  If so, you are probably a visual learner.  (Click here to learn more about discovering your own learning style.)  This is how Braille can function for a student that is blind; it’s her way of “seeing” the text for herself.

Having the text read aloud is a reasonable accommodation, but it is not fully inclusive.

Here is another example:

Students work in groups to explore leadership and community building.  They engage in an activity that relies on social cues and interactions and is almost entirely visual. Half the group must build a structure without speaking. The other half receives a list of behaviors to observe, and are each assigned a student in the building group to secretly watch. Is it possible to reasonably accommodate this activity? You might add a listening role for a student with vision issues; but what about the student who is unable to read social cues? What about those who have hearing impairments or processing issues? Adding roles for students with disabilities might seem like a reasonable accommodation, but it is not fully inclusive. Reworking the activity in a way that enables every student’s participation without “tacking on” an extra role is how this will shift from accommodating to including.

Inclusion is about belonging. Reasonable and appropriate accommodations can help us to integrate our students, but intentionality and planning is needed to ensure that every student belongs—all the time.

What is the best way to think about the relationship between accommodations and the inclusive classroom? Tell us about it in the comments section below!

3 Ways Talking to Autistic Adults Can Make You a Better Teacher

Experts Everywhere

By Michael Scott Monje Jr.

We aren’t necessarily trained educators (although some of us are), but we have an advantage over people who are: we understand what it’s like to be on the receiving end of accommodations and special education. Here’s what listening to our experiences can do for you as a teacher:

3. You’ll be forced to confront your assumptions about your students

It’s easy to look at someone like me and to mentally apply a label. Asperger’s, you might think. High-functioning. Verbal.

The problem with this kind of mental labeling is that it only really speaks to your perception of me now, as an adult who is closing in on middle age. You don’t know what I was like when I was five or ten or fifteen. You don’t know whether I could vocalize during my elementary school years or not. You apply those labels based on what you see of me now, not based on my history. This kind of shortcut in thinking is understandable and human, but it is also an error. It assumes that people are static and that certain kinds of impairment are insurmountable.

Given your profession and your position within that profession, that’s not a mistake you can afford to make.

If you listen and you hear about the varieties of our experience, you’ll start to really appreciate this in a new way. Not only will you learn that there are many of us who had speech delays well into adulthood, you’ll start to hear about the delays and problems we still have.

For example, I still have times when I find it impossible to speak. All of my developmental milestones for speech were “on time” when I was a kid, but under certain circumstances, I just can’t talk. The truly unfortunate thing is, losing my voice is more common when I’m being asked to do something that I don’t truly consent to or when I feel like my rights are being stepped on. This means that it’s incredibly difficult for me to actually say what I want or need during the times that it is most important that I be able to.

This access issue goes away if I’m allowed to simply type instead of talking, but most people do not believe that there is such a huge gap between what I’m capable of saying and what I’m capable of writing, because they see my ability to adhere to certain social roles and pre-defined interactions (such as etiquette-based exchanges) and they assume that the things I’ve been taught to say reflect the things that are actually going through my mind. The very real schism between what I am capable of navigating and what I am capable of fully participating in has been the defining feature of my adult life, and it is very much caused by the same kind of shortcut in thinking that leads to autism parents and educators quietly applying function labels when they see that I can talk.

I’m not really a special case, either. There are several other bloggers out there who discuss (much more often than I do) the varieties of ways that they communicate under stressful or uncertain circumstances.

We are like the children you work with. We are like all of them, just not all at once. My ability to put on a social performance that is comfortable for you doesn’t change that. Instead of looking at our more-or-less normative performances as adults and seeing that we have “overcome” or that we are “higher functioning” than you expected, consider the idea that we are capable of translating. It’s hard, and we’re not infallible—all communication involves inference and inductive reasoning, and we can make mistakes—but we have an advantage. We share a frame of reference with your students that most of you don’t share.

The fact is that a lot of child development theory is based on conjecture and observed behavior under very limited circumstances. When children are developing outside of the projections of theory, then theory really just starts to be about one of two things: Either it becomes a mess of guessing and hoping that you’ve guessed right, or it becomes a blueprint for shaping a certain kind of behavior instead of being a blueprint for understanding the actual experiences that people have.

Both of those choices are awful when there is a third option available: Gathering more information from people who have experienced an alternative developmental path and creating new theory.

2. You’ll be put in touch with cultural resources that you might not otherwise be able to access

One of the first questions I’m asked whenever I meet a new parent in the community or a new educator looking for resources is whether or not I’m the only one doing this kind of work right now. It just amazes me. Not because I don’t understand the feeling, but because I still do, even now.

I’ve been presenting my writing publicly for about 3 years, and when I started, I thought that all the blogs except mine were written by parents. It only took a couple of months for me to realize how wrong I was. Not only is there a community that is both wide and deep, there is a multi-generational written legacy. It’s mostly preserved online and spread through word of mouth, but there have been discussion groups, both public and private, for about as long as there has been an internet. The documents produced by those communities and published in a mixture of print and ebook anthologies, blogs, journals, and even grassroots ‘zines represent years of documented lived experience, complete with critical commentary.

The thing is, if you’re not talking to us, you’re not likely to find a lot of the important work that’s been done. This means that your ideas about what your students might expect as they grow up and enter our community are not likely to be very accurate.

It’s not that any of this information has been kept secret, either. It’s just that spreading the word is difficult when you have medical professionals, teachers, legislators, and even some parents of autistic kids pushing back against you with their ill-informed (but not always malicious) preconceptions about what you’re capable of or how challenging your school years were.

The fact is that there are a lot of us talking about our personal growth and development, documenting when we talked, when we wrote, what we wrote about… We’re not just philosophers telling you what we wish you to believe about ourselves—we’re also a grassroots-organized coalition of observers who are writing themselves up as case studies and sharing the results with one another. We’re taking notes about how many other people we see in our community share which traits, and we can do this because we’re all sharing our experiences with each other and listening to one another.

The conversation’s still in its early stages, but there’s even work being done on the ways that autism might impact our perceptions of ourselves in terms of gender presentation and sexual orientation. In addition to that, there are Autistic people representing a diverse array of ethnic, racial, regional, and traditional cultures writing about their experiences, including the difficulty they encounter when attempting to access basic educational resources. Often, they offer an intersectional and critical point-of-view that is informed by many of the same writers you read during your formal education and training.

We have conferences and we network, too. If you’re not seeing our promotional materials yet, then maybe it’s time to ask yourself what communities you are participating in, and what those communities can do to improve their representation of our voices.

1. You’ll learn why calling us “self-advocates” isn’t quite right

It’s not that the term is offensive. It’s not even that it’s necessarily inaccurate—I am a self-advocate when I need to be. It’s just that “self-advocate” doesn’t really describe what I’m doing most of the time. Look back over this article. My advocacy here isn’t for myself. I don’t benefit from changes to the K-12 curriculum, I’m over thirty.

It’s totally appropriate to call me a “self-advocate” when I am engaged with either public policy debates or interactions with the medical community because those are times that I’m actually advocating for myself and trying to gain access to resources and supports. Similarly, it’s totally appropriate for you to want your students to grow into self-advocacy. I’m absolutely not arguing against the term or the goal.

The issue comes in when you refer to people who are taking time away from their personal and professional lives in order to educate you or help your students as “self-advocates”. In that context, it becomes an erasure of our contributions to the ongoing conversation, because it labels our attempts to act as role models, as teachers, and as community members as self-centered acts. Maybe not selfish acts, but self-centered acts.

The fact is, though, that our attempts to reach out and to do these things are not self-centered acts. They are acts of absolute selflessness. For many of us, re-engaging with the K-12 school system and/or its representatives is stressful. When we do it, it is out of empathy for students that remind us a lot of ourselves, and it is for their benefit. Not ours. Not yours.

We don’t reach out to people in your profession to advocate for ourselves, and we don’t do it to tell you how to do your jobs. We do it because we did not have role models that reminded us of ourselves when we grew up, and we don’t want today’s generation of Autistic kids to grow up without them.

So don’t call us “self-advocates”. At least, not when we’re trying to advocate for something larger than ourselves. Go ahead and call us activists, because we’re working to build a society that is different from the one we were born into. Call us mentors, because we don’t just want to help you to communicate better—we also want to help your students learn to be adults in our community.

Or you can call us teachers, because a lot of us are. More than you might realize.

Photo Credit: Chris Sloan

Michael Scott Monje Jr. is a writer and writing teacher from West Michigan. Ze holds an MFA from Western Michigan University, where ze also teaches first-year writing. Zir novels include Mirror Project and Nothing is Right. Before becoming a college writing teacher, Michael worked part-time for the Kalamazoo Public School district for several years.
Michael blogs at Shaping Clay, where ze posts essays, poetry, and the web serial “Defiant.”

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