Differences

I’ve been doing some reading, on Amanda Baggs’ site, various articles linked to from Neurodiversity, and other random internet ramblings. I’ve been trying to give my internet explorations some content, so that they’re more than just agitated stimming as I click through pages. Social communication continues to be one of my special interests, and I keep discovering new things. I’ve also been thinking a lot about various conversations I’ve had with a Very Famous Professor who has permitted me to come to her office hours and join in her research lab. She’s very much into the interface between language competence and social cognition and “intelligence”. What, exactly, the end result of all these fermenting thoughts will be I am not exactly certain, but the emphasis, the guiding factor, I think will be about various differences in special populations, specifically Autistic ones, which get misconstrued as deficits, and the implications thereof.

(Mandatory disclaimer: Absolutely nothing I say in the following should be misconstrued as to mean that I do not consider Autism a disability. Thank you.)

There is a widely circulating myth out there which stipulates that Autistics cannot read faces or understand emotions. Calling this a myth may startle some of you, so permit me to lay the foundation for my explanation. First, the tests which have been used: Morton Gernsbacher has done some research which suggests that the reason Autistic children fail to correctly identify the emotions on faces is because they are not attending to them: when they do attend, their performance is commensurate with children matched for IQ, language, etc. Others flunk the tests but can do quite well in real-time, contextual situations.  Same with the theory of mind tests. In my experience, by the time Autistics reach adolescences they can typically pass such a test; the frustration comes, as many report, from not necessarily being able to deploy these skills in real-time. I will come back to this real-time problem later.

In addition, there are articles and personal anecdotes suggesting that, if anything, Autistics may be more sensitive to the emotions of others that their neurotypical peers! Knowing how to respond appropriately or understand what is going on may be another issue, but the awareness is there.

Which is fascinating stuff, but doesn’t answer the question of why Autistics, from myself to Daniel, seem to have such profound social difficulties.  Why can’t Daniel identify his emotional state? Why can’t I know what someone is thinking just by looking at them?

The answer is four-fold. The first part may simply be that the child lacks the necessary vocabulary. For years we assumed that Peter had an appropriate understanding of emotional labels, only to discover this year that he had no understanding of them and needed explicit instruction. This is a language issues, not an issue of connectivity or emotional awareness.

The second factor has to do with different communicative styles, which Amanda has touched on wonderfully in Yep we do have nonverbal communication, elaborating further on Dialects of nonverbal language, and also picking up a double standard here . The central thesis seems to be that there are different dialects of nonverbal language, just as there are different dialects of spoken language, and that some neurotypes are better suited to some more than others. This can explain the difficulties Autistics have reading some neurotypicals, and that neurotypicals have reading some Autistics. Some dialects are mutually unintelligible. How this fits in with Paul Ekamn’s research, I do not know, but this makes more sense to me.

It also raises two other points having to do with “social skills”. One is the need for social “filler”, idle chitchat, shallow surface conversations–you know, the stuff we Aspies struggle with. Amanda notes

I began to understand why there are so many polite conventions among non-autistic people built around sparing each other’s feelings: They can often see all that about each other, and it must be a protection and a politeness to avoid being too invasive.

And then it throws them off when I plunge right into a personal or intellectual conversation without the customary levels of protection. Especially if they think I can read them.

This also fits in with a common conception that “human interaction is human interaction”. That all social communication is equal, and different friends can be “separate but equal”, and either an interaction is positive or negative, that’s all there is to it. That there’s no such thing as breadth or depth or weight when it comes to conversation and friendship. Which then creates problems for those of us who are taught about different levels and types of friendships and interactions, and the rules associated with these, and then we go around acting on these principles only to be told quite unequivocally that we are wrong, we just need to stop thinking and start interacting, connecting.

And in a way that’s correct, and all the rules we’ve learned are artifacts of trying to make something instinctive intellectual. Perhaps if we simply deliberately created opportunities for enjoyable connection with peers and worked on necessary language skills and aided the child in processing such interactions….perhaps that would work better than regimented “social skills” sessions or group. I read a lecture which proposed doing exactly that, suggesting that Autistic children experience only a fraction of the total number of daily, spontaneous social connections that typical children have, which then causes and reinforces isolation. The solution proposed was peer educating and adult facilitation, looking to give the child someone with whom they could exchange brief interactions about homework, their day, etc.

And this ties into what I was trying to talk about earlier, that human interaction is actually fairly simple at its core. Spend time with people doing things together. Simple as that. I know I’ve seen it as much more complicated because I didn’t, don’t, know how to process it, and processing gets harder if you don’t speak the same language, verbal or not. But once you’ve found someone you can communicate with, and once you know how to spend time with someone–referencing, commenting, and jointly attending, not in parallels but intersecting, connecting–it starts to build on and reinforce itself. And that’s how friends are made.

And the best way to get there with your Autistic child or friend is to simply create those opportunities. You might have to get creative, but it can be done, it’s essential that it happen as least as often as typical if not more often, and it will get easier with time. Stanley Greenspan and Morton Gernsbacher have great stuff on this; Gernsbacher in particular has a quick read about reciprocity on Autistic children–hint: their attempts at reciprocity go widely unrecognized and unrewarded, building a cycle of isolation.

All of this is great and all, but it assumes that a person is capable of real-time communication. As Amanda highlights, this often presents as a serious challenge. I deal with a milder version of this, and it can be incredibly frustrating in a world where everyone is supposed to be able to communicate at a drop of a hat, and all such communication is presumed to be meaningful or what one wants to say. It is important to be sensitive to this issue and give time. “Delayed echolaia”, for example, may not be so dysfunctional at all.

And speaking of real-time communication, I’m running out of steam. I want to highlight a couple of things in closing. One is the way this fits in with Donna Williams’ “fruit salad” theory of Autism. Every person with Autism is different. Every Autism is different. Some people propose that language difficulties, in particular narrative issues, underlie Autism. Others suggest Autism is an inability to connect emotions with motor plans as quickly as one might like. Both theories intrigue me; neither is necessarily true for everyone, although I’m sure one can find their traces in this post.

Secondly I want to highlight the incredible ableism of much past and present research on Autism. It’s not even just talk of defective brains and dim prospects, but an unconscionable lack of intellectual rigor, true understanding, or consultation of Autistics. It makes reading papers quite difficult for me.

Finally, as I’ve spent hours in research reading amazingly eloquent, spot-on pieces by other bloggers who tie in a wide variety of issues, take unique perspectives, and come to forceful and self-sufficient conclusions, I’ve decided that as much as I might wish otherwise, this is not the blog for that. This is a blog by a college student, a special educator, and a teenager. It is reflective of all three. I am not particularly interested in feminist or disability theory. This shows. I am more interested in understanding puzzles which present themselves to me.

And that’s okay too. It’s another difference, not a deficit. If this post is about anything, it is about moving past a deficit-based model of Autism.

Fruit Salad

Donna Williams is, I believe, responsible for the “fruit salad” theory of Autism, which holds that the differences and mechanisms underlying each individual’s Autism will differ in combination from person to person, just like fruit salad. And this has important implications in a lot of different areas. It explains, for example, why some Autistic people have no narrative or symbolic abilities initially, and others do. Why some have food allergies or GI issues, and others don’t. Why some have this sensory sensitivity, and others that. Why some things work for some, and others for others. Why different theories work for different people.

For me, it also raises the question of how can I believe in neurodiversity when everyone’s brain, everyone’s Autism, everyone’s experience is different. To which I say that initially I believed in it because I thought everyone’s brain was like mine. Now it’s not about that assumption anymore. Now it’s about disability rights, and diversity, and social justice. It’s about what is the best way to ensure human rights and equality for people with disabilities? It’s about listening to what a wide variety of people with a wide variety of experiences are saying. It doesn’t  have anything to do with uniformity, or being “high functioning”.

That said, I’m sure Autism must have some basic common features among the different phenotypes. I’m not sure what they are, though. I’m not sure the DSM criteria really address them.

And I have more thoughts, about socialization and nonverbal language and communication and such, but not for now.

Needs To Be Said

My experience is my own.

You have absolutely no right to tell me that it is wrong.

I do not give you my permission to tell me that my pain is illogical, or that my observations on human interaction are wrong because they differ from yours. You are not allowed to trivialize and misrepresent what I say. You are not allowed to pretend that you can see what’s in my head better than I can.

You are no longer allowed to “if you just…” me. You are no longer allowed to fixate on fixing me.

If you want a philosophical discussion, you have it when the other person is ready, and you are intellectually rigorous in your arguments. When I am asking you to understand, you are not allowed to demand that I accomodate you because my way of thinking is different.

Educate me, yes. Tell me how your experience differs, of course. But don’t invalidate or disallow my very real experiences.

And while I’m at it?

Please listen to what I tell you. If I don’t know how to say something, or what is wrong, or what I need, I really don’t know. I KNOW that I am smart and verbal and usually quite articulate in appearance. I am also Autistic, and sometimes my words don’t work the way yours do. I am even more frustrated by it than you. I need support, not exasperation.

For God’s sake, let my experiences be mine. They’re all I have.

Social Skills

I think the dominant paradigm concerning “social skills”, what they are, and how to teach them, is flawed. Or perhaps merely inadequate. The focus seems to be on teaching children a set of rules, with the expectation being that once kids master this simple list, they will be able to interact in perfect synchrony with their peers. Which is a great theory, and it actually works really well for some kids with, say, NLD. My brother is NLD, and once he’s completed his typical social skills training, he’ll be fine.

But for kids who are Autistic, be they Asperger’s/HFA like me or Kanners like the kinds I work with, “social skills” aren’t going to cut it. We absolutely need to learn the “hidden curriculum”, how to not be brutally honest all the time, how to interpret faces and voices. We need theory of mind, we need to learn how to take turns, etc. This is what is typically meant by “social skills”.

But it doesn’t even scratch the surface.

I came to this conclusion while I was feeling bitter about the fact that my brother is getting all of this social skills training whereas I was denied it. I learned the hidden curriculum by having friends explicitly teach it to me, I learned to read faces and voices through trial-and-error, systemizing, and theater productions.  I developed theory of mind with terrifying spontaneity when I was 13. And I spent my high school years trying to figure out how to insert my self into the lives of my peers, and failing miserably. I had, eventually, “social skills”. But that didn’t mean that I knew what to do with them, knew how to be around other people, knew how to be fundamentally social.

I needed a more fundamental set of skills first. I was able to develop them slowly over time; more profoundly Autistic kids like Daniel, Peter, and Griffin need them to be explicitly taught before they can learn the formal curriculum.

These fundamental things go back to our core “triad of impairments”. They are skills like joint attention, social referencing, commentary, sharing experiences and things you enjoy or are interested by, turn-taking, how to have sustained social interactions–be they verbal or not–how to share experiences with another, how to tune-in to another person, etc. Basically, how to connect with another person, spontaneously, and enjoy that connection.

Developing a complex mode of communication suitable for conversation can’t hurt either.

These skills are so fundamental that most people are unconcious of them and don’t know how to teach them. But they need to be taught, in a fun and relaxed manner, and practiced until they are sublimated and become automatic, unconscious practices. Only then will the traditional curriculum of “social skills” become meaningful or useful. The thing which aggravated me the most about Lifeskills is that sustained and deliberate focus on these skills never occurred except for five or ten minutes at the end of the day. But the kids loved those few minutes. They drank it up. And I know, we’re supposed to focus on academics at the middle school, but this struck me as so much more important.

I was reading that one of the main problems for Autistic high schoolers isn’t so much that they lack social skills as it is that they lack social opportunity. In the lives of typical high schoolers, every minute not devoted to academics is fundamentally social. Kids text, have whispered conversations in the halls, pass notes, exchange glances, etc. Dozens of tiny connections are made throughout the day. Autistic kids are lucky if they get a couple.  And this lack of opportunity and practice is far more damning than their skillsets. How will they ever improve if their social worlds are so impoverished?

It’s similar to the problems Peter and Daniel have responding to conversations and making full sentences. They’ve been without a communication system for years, and now they have to make up 12 years of development, with remarkably few opportunities to do so or structured help and scaffolding along the way.

So what am I saying?

I’m saying that Autistic kids are not fundamentally asocial, and that there is a lot of potential for social growth. But intensive, back-to-basics instruction is needed–not ABA, ABA wouldn’t work for this, but lots of structured, yet relaxed and enjoyable, time to learn and practice the various components of connecting to and socializing with other people.  It can’t just be a half-hour social group every day–it needs to be interwoven into all daily activities, the way socializing is. Authentic experiences and learning need to be stressed. Getting reciprocal, student-initiated contact is the most important thing. The rest builds on that.

I didn’t need things broken down as much as other people, and so I was able to master parts of it on my own. But sink-or-swim is not a generally useful philosophy. Even high-functioning kids–even older, mature, maybe even “adult” high functioning kids–who appear to just need basic social skills training may actually need more intensive intervention in basic connecting. We can be awfully good at faking it.

And while I’m at it…

The goal of any intervention, especially this sort, should never be “removing the Autism”. The point is to get the individual to the point where they can achieve the degree of socialization and connection which they desire and are able to handle, successfully. To give them that choice, chance, ability. Not to make them look or act typical.

Kanner

I was just rereading Kanner’s original paper (the pdf version), and as usual, I was intrigued.

There seems to be a subconscious movement to redefine “Kranner’s Autism” as Autism with Intellectual Disability, LFA, etc. But all but one or two of Kanner’s original eleven spoke.  None of them were intellectually disabled. All of them had, at a young age, difficulties with or absence of join attention, social referencing, commenting on the world/asking questions, and speech oddities and repetitive behaviors.

I am saying this because the new DSM appears to be returning more closely to Kanner’s original description, rejecting the myth of most Autistics as nonverbal or intellectually disabled (and getting rid of Asperger’s, reintegrating it with Autism officially). See their report. New criteria would focus on social communication and repetitive behaviors exclusively. While I don’t think that a behavioral analysis really gets at the heart of Autism, I do think that this revised diagnostic criteria is more accurate of reality than the old (although it ignores sensory issues). I still think that the interesting question is why don’t Autistic kids automatically develop joint attention et cetera? What neural mechanisms underlie this?And how do they account for the incredible variety of presentation, especially as you move from more-to-less severe Autism?

Anyways. A brief post, but it’s what’s on my mind. (That and the incredible feat of connecting with someone.)

Speaking Of Abilities Not Stagnating

I just called my doctor in a panic. Conversation recreated below.

“I’m not Autistic anymore!”

“Oh?”

“Yeah! Social referencing, social commentary, joint attention–I’m doing all of that. I have a theory of mind. And I’m having balanced, reciprocal interactions with people, and making friends, and connecting, and managing different types and levels of relationships and I’M NOT SUPPOSED TO BE ABLE TO DO ANY OF THIS IT MAKES NO SENSE AAAAAAAAAAAAAH!”

*cut for long identity crisis*

In the end, we worked some stuff out.

• Regardless of how I’m doing now, my developmental history does not lie. It shows a constant trajectory of significant progress is various stages. It also clearly shows Autism, and areas still for concern.
• My current level of social functioning is a direct result of four years of remarkably hard work. From my discovery of theory of mind, to my friends explicitly teaching me a hidden curriculum, to lots of observation and puzzling out of social interactions, not to mention many failed attempts.
• Success is to be celebrated.
• My success is what happens when you combine time, acceptance of my limits and uniquness, education, support, and an unbelievable amount of work.
• About 20% of HFA/AS kids are said to “outgrow” it.  What this MEANS is another thing entirely, but generally speaking, the improvement I am seeing is not unusual.
• My issues with eye contact, sensory issues, interacting with multiple people and groups, central coherence, and executive function continue to be prominent and very Autistic-like. My repetitive behaviors and stims are as strong as ever.
• One does not simply “grow out of it”. One learns how to manage and enjoy life in this world. One develops skills, and the skills get reinforced enough to become subconscious processes.  One *adapts*. One relaxes. And once you have certain skills in place and are happy and content and get enough attempts at communication reinforced and reciprocated–which has as much to do with your friends as it does with you–then this happens.

Some may considered me “cured”. I know that when I am off my meds, I am not. I know that all that is changed is that I have finally, finally connected. And this is major. This is huge.  I just know that I finally figured it out, integrated everything into a gestalt, and now I can enjoy socializing on my terms.

And that’s all I’ve ever wanted.

Independence And Supports

I am not interested, in this particular post, in explaining why assistance technology and supported daily lives do not detract from independence, or why independence is not necessarily a goal, or why I focus on autonomy and self-determination instead. That’s for another, more philosophical post. In this post I want to talk about the boys I work with, and their prospects, and how this challenges some stereotypes, reinforces others, and fits in with the social model. I also want to highlight one very important, very salient fact:

Abilities are never stagnate.

I illustrate this based on the experience of three boys I’ve worked with, all with–at the very least–Kranner’s Autism/Classic Autism/Moderate–Severe Autism.

These three boys will be identified as Griffin, Peter, and Daniel.  A brief summary: Griffin is verbal, intellectually disabled, and probably the closest to Kranner’s original patients. He has severe issues with adaptivity, some savant abilities, and is very much a teenage boy. Peter is nonverbal but capable of using several speech-output devices–Dynavox, Tango, etc. He enjoys communicating, although he has trouble understanding how conversations work and how to compose full sentences, as well as how to ask questions. He is learning these skills slowly but surely. He is very smart, doing eight-grade science with his peers, particularly enjoying punnet squares and taxidermy. He also has some pretty major behavioral issues which interfere with mainstreaming, or really any academic or social challenge. Daniel is the youngest, and is minimally verbal due to a sort of apraxia of speech. He also uses a device with great success, and is also learning the art of full sentences, questions, and conversations. He has a great many secondary issues, such as PTSD, behavioral manifestations, and who knows what else–it is very hard to help him with psychiatric issues when he can’t tell you how he’s thinking. Despite this, he is very smart, hyperlexic, and, like Peter, very social and affectionate.

When I first encountered these boys a year ago, I was much less optimistic about their futures. They struck me as rigid, compromised individuals who screamed all the time and were beyond much assistance. But, like many surface impressions of any autistic individual, these impressions and predictions proved to be completely baseless.

I have watched these boys mature, grow, develop, and learn, slowly but surely, for over a year. Some may consider their advances minuscule and insignificant; I see them as extraordinary and, if not transformative, important. Both Peter and Daniel have become comfortable and functional on their devices to the point where we can finally start tutoring in conversation, asking questions, composing sentences–essentially, in generating original content. Both Peter and Daniel have begun to regulate their behaviors. Griffin has begun to initiate conversation. These seem like small things in and of themselves, perhaps, but they represent quantum cognitive leaps and lay the foundation for a whole new array of vital skills. They indicate that abilities are not stagnant, progress is possible, the solution is not to despair but to educate, support, encourage.

And so I have reconsidered what their futures might look like.

For all three, I am not naive. Various forms of support and assistant technology will continue to be essential, and will probably play an even bigger role than they do currently. But here I think of Amelia, a young woman–also Autistic and intellectually disabled–I know, who requires a wide variety of visual supports in her day-to-day life. Her house–like mine currently does–will someday abound with charts delineating various steps in basic routines such as washing dishes and getting snacks. But as long as she has this chart to remind her of the proper sequence of steps and break everything down, she can function autonomously.

I see a similar future for the boys. There are various devices they can access which store lists upon lists of such routines, and for Peter and Daniel in particular, accessing these devices should be even more effortless and functional than using their AACs. Griffin, for his part, loves technology and already uses something similar. These devices, in a way, take on the role of a paraprofessional’s coaching or long lists of routines plastered everywhere, but they require an element of choice and do-it-yourself that is not seen in these other options. They don’t just encourage, but require autonomy and self-determination.

And so I see a future for the boys in which family members and staff play a role, but the communication of wants and needs, self determination, and autonomy are preserved, valued, and given precedent. In other words, I see a life analogous to the life of someone with, for example, CP or MD. There is support, and the support is perhaps more explicit, physical than the sort a TAB person receives. But there are worse things. The point is, not one of these boys will need full-time care, or institutionalization, whereas twenty years ago that would have been the norm. The point is, abilities do not stagnate. The point is, education, accessibility, and support go a long way.

These boys are not going to be “supercrips”. They will not be able to fit into the conformationist model of disability–the one which insists that “anything you can do, I can do better” or “I’m just like you!”. But there is another part of the much-malingered social model which address issues of social justice and human rights. And neither of those factors is out of their reach, out of anybodies reach. And if you don’t see that, if you don’t see that autonomy and self-determination and social justice are human rights and not mutually exclusive with being disabled, that even the disabled can lead fulfilling, just, self-directed lives, then I really don’t know what to say to you other than open your ears and listen. Do some basic research.

On Brain Transplants

Usually I can go a long and happy time without needing to think about the hypothetical “cure” question. But I’ve had a few disparate thoughts lately, probably because I’ve been taking a class in the history & philosophy of psychology, so I’ll relate them here.

There are two basic conceptions of “cure”. One sees a cure as essentially a brain transplant, the other sees cure as about improving independent functioning, removing impairments. You cannot easily divide up who supports or attacks which cure into strict camps of “NDs” and “Curebies”, and I will not attempt to. Nor will I talk, so much, in this post about whether or not various views come from a deeper-seated fear and hatred of Autism. I believe it is possible to hold either conception of a cure while either accepting or attempting to eradicate autism although obviously it will have some influence on what course of action towards a cure you advocate.

To be honest, I don’t even like using the word “cure”, as though Autism is cancer–which is simply not medically true. But I think there may be some be common ground between the various factions in the Autism community.  For example, if “cure” is defined as “improvement in independent functioning” and evidenced by the gradual acquisition of, for example, the ability to communicate in complete sentences, generate original content, or converse? Then I, for one, would be considered “pro-cure”, as would a great many of my also incidentally pro-neurodiversity friends. Not, perhaps, “Autism is the devil” or “Autism is to blame for everything” or “Autism HAS my child” or “Cure at any cost”. But pro-cure nonetheless.

It can be hard, however, to separate a pro-cure stance focusing on functioning with one which demonizes Autism and calls for, essentially, brain-transplants.  In addition, there is a great deal of disagreement about what, exactly, constitutes a “brain transplant”, as it were. And–here it gets a bit wonky–this disagreement seems to stem from two basic issues.

1. Is it desirable to want your Autistic child to become Neurotypical?

2. Is there a difference between mind/personhood/personality/self and the brain?

If you believe that there is your child and then there is his brain, and the two are separate, then it makes sense to consider making his brain as typical as possible because you don’t believe you are changing who your child fundamentally is. But if you don’t share that belief, you will probably be adamantly anti-cure in this sense.

Personally, I prefer not to think about cures, and just focus on improving functioning and celebrating the person they are and letting them be a child. Working towards autonomy, not neurotyplicity. I am, in a sense, pro-cure.

I’d just like to see more people acknowledging the common ground.

Updates

1. As you can see, the theme changed. We’ll see how long it lasts.

2. I have a new blog, I Have To Ask, for political stuff–health care, absurdity, political dilemmas, queries, and philosophy, etc. Check it out!

3. The title for this blog has been changed from Barefoot Amongst Birch Trees to Room 36.

Have a nice day!

Talking About You

The strangest thing  in lifeskills (the site of my internships teaching profoundly, multiply, or low-incidence disabled kids) is that you talk about the kids in front of them.This raises some thorny ethical questions: would I do this in front of a typical child? Am I being disrespectful? Am I disregarding this person’s dignity? What else can I do?

But, in the classroom I worked in, this practice was not rooted in assumptions of inferiority or ableism. It was not because the students couldn’t hear, or couldn’t understand, or were somehow subhuman. It’s because it’s the only way you can learn about them, learn how to teach them, by asking the older teachers questions and sharing what you know. I think it’s a teaching thing, not a devaluing this, although it did give me pause at first.

But you get used to it. You swap comments quickly back and forth: “He has trouble counting the syllables in words.” “What if you tried…”. The decision to not save all your comments and questions until after school–although, certainly, you save some–enables a constant atmosphere of cooperation and problem-solving. While Alex is reading his favorite book in the corner, the teachers are debating different methods of teaching him to count coins.While Meg was reading a book, a teacher would be narrating to me her instructional program. When Meg played with her blocks or did her work, I would ask the teacher, discreetly as possible, about her cognitive abilities in this or that area, so that I could better understand how to target instruction and adjust my expectations.

Lifeskills teachers don’t have the benefit of having periods every day free of students to do this discussing, and it has to get done. And there’s more to discuss with these kids, who tend to defy expectations and require years of concerted study and yes, discussion, to understand how to help. So we do it, as respectfully as possible, trying to limit questions and comments to matters of teaching and observation, as respectful as possible. When possible, you ask the kid–but sometimes they just can’t tell you. So you default to the next-best thing.

I still don’t know if I’m entirely comfortable with it, but I see no way around it. The conversations are as respectful as they can be in this medium, and there’s a different feel to them than when the teacher in the lunchroom sniffs to her friend “they don’t even bother getting Alex to take an apple” as we stand three feet away.

Which is another strange facet of this world; minutes after you discuss an issue a student is having with a teacher, you enter a classroom with the student and hear his classmates doing the same–only with brazen contempt, in full knowledge that the student is five feet away with ears in good working order. Because, in their eyes, their classmate isn’t in need of explaining, accommodating, or understanding, but simply removing. The disgust or pity leaks out of their voices and sets my teeth on edge.

It’s the difference, I suppose, between two situations I observed. In the first, Jason was greeting his classmates, and his mainstream teacher instructed the class to “make sure he looks you in the eyes. Eye contact is very hard for autistic people.” Beyond the problems with forcing eye contact or putting fellow students in positions of power and preference over Jason, her attitude of “he-can’t-hear-me” was as evident and as striking as her neglecting to, perhaps, issue the instruction to Jason. The implications of inferiority were clear.

In the second instance, however, Jason’s AAC device broke and so she explained to the class that he was screaming because, in addition to having to come back from vacation and do actual work, he now had no way to communicate with anyone and so was understandably upset. In this instance she did a marvelous job of respecting and advocating for Jason while making his atypical behaviors understandable to his classmates, fostering understanding and acceptance.

And I guess that instance was what made me okay with the seemingly bizarre protocol in room 36. Efficient sharing of information to foster understanding and facilitate effective teaching, with the end goal of having a student who can communicate the information himself, is not a bad thing. If anything, it’s basic advocacy.

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