What follows is my interview with a teacher. A teacher who teaches Autistic students. A teacher who is Autistic.
When were you diagnosed with Autism?
I self-diagnosed as having NLD (Nonverbal Learning Disability) (which I mistakenly thought was mutually exclusive to Autism – a good reason to get a professional diagnosis, not a web diagnosis) in college, which brought me a lot of peace of mind and self-understanding. (And helped me make peace with a lot of my past.) I was in my 30s when I finally made the decision to get the formal diagnosis. (I was both right and wrong: I do have NLD, but I’m also on the Autism Spectrum.)
I got the diagnosis because I was having a lot of trouble communicating effectively at work, and I was getting written up for it. My supervisors were trying to work with me, but I was afraid I was going to lose my job. It wasn’t the first job I’ve had that happen at. The problems my coworkers were going to administration about were hauntingly familiar: my voice tone, my inability to read others voice tone, my quick answers that don’t make sense and sound frustrated. It was a pattern I’d seen before and had never had any success stopping or changing. I knew I needed help if I wanted to save this job.
Why do you prefer remaining anonymous?
For now, at least, I want to maintain control over disclosure. Also, privacy. The web is public and it stays there forever. I’m not comfortable with anything about me, disability related or not, being out there like that. I don’t have anything meaningful out on the web under my real name, and I’ll keep it that way, thanks.
How did you get into teaching?
I think it’s in my blood. My dad is a teacher. I remember being in first grade, when everyone wants to be police officers and firemen: I wanted to be a special education teacher. I got a BA in Psychology and spent 5 years doing direct care before moving to work in the schools. I worked as a paraprofessional while I got my M.Ed. I’m certified in intensive special needs and deaf/blind education.
Would you talk about your childhood and how autism affected it?
I did the stereotypical “little professor” thing. My mom says my favorite word as a kid was “actually.” I had friends growing up, and if my parents thought my relationships with them were a little off, I never noticed. I had no other standard of relations, and I was happy with what I had. My mom tried vainly to model more appropriate social interactions (my poor mother) but it all went right over my head (I do not learn from environmental cues or social models.)
Middle and high school were rough. I was the victim of significant bullying. Kids are mean. I considered changing schools (I went to public school) but decided against it. Instead, I dove into my interests: computers, foreign languages, band, technical theater. Bullying happens during the unstructured times of the school day. I was never unstructured, participating in more classes and extracurriculars than there were hours in the day. (I seriously could have used Hermione’s time turner back then….) Not only did it give me structure and purpose, but it successfully buffered me from my would-be tormentors.
Are you concerned that if the school where you work knew you were Autistic your job would be in jeopardy?
I’d be worried about an employer learning that I was Autistic before I had a chance to prove myself as a teacher, yes. The concerns about my communication problems at this job came in the context of “we love your passion, but…” I had already proven myself, multiple times over, as a good teacher getting excellent results with students who are considered difficult. Afterward, I could see I had to re-prove myself because the words of my NT (neurotypical) paraprofessionals (sometimes not just in the area of classroom communication) carried more weight than mine did. I have reason to believe we’ve gotten past that now, but it lingers in the back of my mind. I know I have to work harder and sometimes that makes me mad. Luckily, I have an administration and paraprofessionals who support me in the work I do and who respect that I am approaching it from an Autistic perspective (even if they don’t always understand that perspective.) I haven’t always been that lucky, and I am continuously grateful for it.
You say, “with the right accommodations..” can you give an example of a couple that are helpful?
Using written communication when possible. This frees me up to only address questions that need to be addressed, which is means I am more likely to be clearer because I can devote the needed resources to perspective taking and processing time. Regular meetings. I don’t pick up on things incidentally unless I’m working hard to pay attention to everything that is going on. That’s impossible when your class is spread between multiple locations. Regular meetings give me a chance to make sure we’re all on the same page at the end of every day and put out any fires before they get out of hand. However, the effectiveness of these meetings is predicated on….
Direct communication from staff. This is quite possibly the hardest accommodation to get and the most important. I ask everyone I work with to be direct with me and everyone says they will. But saying and doing are not the same thing. Most NTs find being as direct as I need them to be as impossible as I find reading their non-verbal language. It’s a real communication gap. I’m incredibly fortunate that I have a para that can bridge the gap. Some of my new paras are starting to learn as well, and I’m starting to learn to read their individual cues. Translation is never as good as reading the original, but we get by.
Having communication support people I can turn to. I have 2 coworkers I can trust to run things by when I’m concerned about how I’m coming across or not sure if I missed a cue from someone else. This doesn’t help, of course, when I’m oblivious to the fact that there was something I should be concerned about in the first place, but it reduces the pool of potential landmines, at least. Also, these are people who can listen for what I’m not hearing on the rumour mill (because I’ll never hear it) and potentially warn me of landmines I’m not aware of. They’ve definitely saved me from several potential disasters already this year.
What are the most common misperceptions you face in trying to teach this population?
Top five misconceptions held by administrators, paraprofessionals, parents, and community members that make my job harder:
- That my students cannot possibly be capable of having control over (or a meaningful say in) what will happen with their lives.
- That the fact that most of my students may never be fully independent (living alone, working full-time) means that we should not bother teaching them community living and vocational skills.
- That my students are unpredictable or dangerous.
- That a student who may exhibit challenging behavior in the school environment shouldn’t be allowed in the community because he might exhibit the same challenging behavior. (This one really makes me angry, because it doesn’t teach the kid anything useful. Give me appropriate staffing to handle the behavior; don’t penalize the kid.)
- That my students should be pitied.
Have you been surprised by any child’s ability?
Have I have taught a student who had more skills than their assessments claimed? Absolutely. Have I ever had a student make more progress in a year than I anticipated and had to amend the IEP part way through? I love it when that happens! Have I ever taught a student who may not have a lot of skills that can be formally assessed, but who enriched my classroom in so many other ways? All the time. I don’t like the word “surprised” – it’s an autism thing, I guess.
How do you deal with self-injurious behavior?
Behavior does not occur in a vacuum and all behavior is communication. SIB (self-injurious behavior) usually has a sensory component, but a FBA (functional behavior assessment) will give clearer answers. We need to look at the environment, the student’s communication strategies, and antecedents and consequences. What is the cause of the stress? How can we teach the student to deal with it more effectively? Generally, positive behavior supports are most effective, but they have to be individualized in order to be effective. What is reinforcing to one student may be aversive to another. Behavior does not occur in a vacuum, and we cannot try to treat it in one.
Can you describe some of your own sensory issues and how they impact your life and work?
I only recently really mastered reliable daily living skill routines. Showering was a difficult sensory experience for me for years. I still have trouble with toothbrushing and flossing, but I’m working on it. I eat pretty bland foods (though, due to food allergies, my diet is both more varied and more monotonous than average) because I don’t care much for significant smells or tastes. I’ve gotten more tolerant of different clothing textures than I was when I was younger. I still freak out at certain textures, but my repertoire has expanded significantly from the “cotton/poly blend only” I wore when I was younger.
At work, I’m in control over the visual environment, since I’m the classroom teacher. So I keep it pretty visually quiet, both for my own sake and that of my students. Any conversations go out of the room, which really helps all of us focus. My para knows to ignore when I’m self-talking, which is my primary self-calming strategy (I try to take that out of the room too, when I can.) I stim when I need to. So do my students. I don’t see that (the stimming) as particularly impacting our work. I bring figits or sit on the floor during meetings (I sit in the back so it’s not disruptive.)
In previous years, when I was trying to pass and having more communication problems, I needed more sensory breaks and did a lot more self-talk (which in turn cased more communication problems.) Now that I’m not trying to pass, I’m more comfortable and less stressed, which means I’m generally more sensory regulated – and if I’m not, dealing with it is no big deal.
Are there specific things you suggest schools can do to help their students?
I think a lot of schools do the first half of this puzzle really well. They have proactive sensory programs: do this activity after this interval for this amount of time. And they have reactive programs: if you see this behavior, offer these choices for this amount of time. The good ones have a mixture of the two. Where the programs tend to miss the mark is in taking it to the next level: teaching the student to recognize when their sensory system is starting to become disregulated and what to do about it. There are some good programs out there for teaching this skill: The Alert Program(TM) is probably the most popular. I’m a fan, personally, of the Incredible 5-Point Scale, because the students can apply it to more than just their sensory system and because it has a more flexible metaphor (colors, numbers, can use pictures) and it ties into emotional regulation and understanding.
What is your opinion regarding stimming?
I stim. My students stim. I won’t stop a student from stimming. My para (the only NT in the room, poor guy) frequently points out that everyone stims, it’s just that society has declared NT stims socially acceptable and autistic stims unacceptable. That said, there are also students who demonstrate self-stimulatory behaviors that are not self-calming but rather a precursor to or the beginnings of further stressed or out of control behavior. It is extremely important to know your student and to know the difference between these two types of behaviors. In one situation, the student is using their own coping strategies to de-stress, and in the other the student is indicating the beginning of losing control, and the environment or stressors needs to be addressed to prevent further escalation.
Have you ever witnessed treatment of a student that you objected?
I’d love to say “no,” but yes, I have. Most of the time it’s things like not giving enough wait time and over-prompting. I get incredibly frustrated by the way that students who are not socially engaging, especially if they have challenging behaviors, tend to get left out in favor of the “easier” kids. But also, yes, I’ve seen what you’re really asking about. I’ve seen students physically moved or restrained when they shouldn’t have been. I’m trained in the use of physical restraint, and yes, I’ve had to use it. Do I like it? No. Is it ever my preference to use it? No. Will I use it as a last resort to keep students safe? Absolutely. And I would 100x prefer to be called in and asked to do so then to have people who are untrained and don’t know what they are doing try to make do. That way only leads to injury, trauma, and possibly death. And I’m not afraid to call it like I see it. I’ve reported coworkers to administration and when needed I’ve filed 51a reports (reports of abuse or neglect.) There are certain benefits to having an overarching sense of right and fair and not feeling bound by social conventions, at least where the students rights and safety are concerned.
Is there any methodology that you prefer and why is that?
The short answer to this question is no. I am very wary of any program that says that a particular methodology is right for all students with diagnosis x. I don’t believe that to be true. The role of the teacher is to be familiar with the breadth of instructional tools that are out there and to find (or adapt) the right tool for the individual student to learn the specific skill. For one student, that might be Discrete Trial Training to learn to attend to directions given in ASL. For another student, that may be a phonics curriculum to learn to read. A third student might be learning vocabulary in the natural context of a community work placement. The one thing that all of these methods have in common is data. I need reliable data taken daily on student achievement to know if the methodology is effective and the student is making progress, or if the instructional method needs to be changed. There is no right or wrong method; I don’t even believe there is a best method. The question is whether the method being used is effectively teaching the student the desired skill, and there is only one way to answer that question: data.
Are there any methodologies that you believe are harmful?
Aversives, repeated use of any form of punishment (including time outs,) restraint used as a programming tool as opposed to an emergency procedure. If you’re doing it on a regular basis, something is wrong.
How do you work with a curriculum given your student’s disparate needs?
The short answer is good staffing ratios and competent paras. Also, using the principles of Universal Design for Learning. By differentiating how I engage each student, and with paraprofessional support for behavior and data-taking, I can have three students engaged in a group setting. I can have a fourth student, with additional paraprofessional support, engaging in the same material with us and connecting to the group as able. If you’re counting, that’s 3 staff and 4 students. I’ve just described to you what my classroom looks like most days.
In an ideal world where Autism carried no stigma and you were able to be open about being Autistic, are there specific things that would allow you to do your job better?
I would like to be able to work with my students on understanding Autistic culture and the Autism community. My school does very well teaching our Deaf students about Deaf Culture and their Deaf identity. I believe we could do the same for the Autistic students. I would like to make that happen, and I know that no one else will lead it, but it would require being open about being Autistic and I’m not ready for that yet. I trust my administration and those I’ve told, but I am not comfortable working with the rest of my co-workers as an Autistic person, which I’d need to do in order to make that happen for these students. It’s something I want to do, but not yet. One day, I hope.
What do you advise people who are thinking about entering the field of special education? Is there anything you wish you’d known when you were just starting out?
Work with kids with disabilities before you go into the schools. Work at multiple schools (or with kids from multiple programs) before you start teaching. One of the downsides to being in the schools, especially since most teachers work as paraprofessionals while they get their degree, is that you work with one student, or one group of students, for years. There is frequently only one or two special education classrooms in the building, so there aren’t a lot of models to observe. I have had too many experiences of people singing the praises of teachers I know to be mediocre at best, because they have no standard to compare them to. See as many different students and teachers as you can before you settle on a specific subset of the population, a school, and a classroom where you want to work. Most importantly, spend time working with typically developing children. You’ll need that reference to fall back on so you can recognize what’s typical age-appropriate nonsense and what is actually behavior that needs to be addressed. We tend to acquire tunnel vision in special education; make sure you don’t put the blinders on until you have to.
What do you advise parents look for of non-speaking children seeking a good school?
Without knowing the specific student or her goals, it is impossible for me to say what program is best. I can tell you what I look for in a school where I would consider working. The one thing that sends up red flags and makes me stay far away is a school that believes there is one right method to teach all students. Simply put, there isn’t. Beyond that, I look for evidence that the people there know how to use picture supports and both high and low tech communication supports, not just for schedules but integrated into everyday activity: academics, leisure/social time, specials, lunch, etc. For an older student, I look for evidence of functional skills and community based learning, not just using pictures to represent and role-play functional community activities, but actually getting out into the school and local community and learning the skills in the real environment.
If you could create a “dream school” what would it be like?
My dream school would have the physical environment, educational methodologies, peers, and teachers and paras with appropriate training and ratios to give each student access to both the general educational curriculum and any related services she needs to be successful as an adult: whatever that looks like for each individual student. My dream school is not one school, but a range of options for every student so that the right option is always available. That option would naturally change over time as the child grows and her needs change, and no one would question the need for that change.
Have you had parents or other staff question the competence of a child in your class?
I had a former administrator tell me a student didn’t matter because his family would take care of him after graduation and to focus all my attention and resources on another student who, she said, actually had a chance of being fully independent. I basically ignored her. They are now both working in the community with support.
Have you had a parent question their child’s competence?
Not directly, but I certainly have known parents who have underestimated their child’s academic or independence skills.
How have you dealt with that?
I don’t judge, because I can’t. I don’t walk in their shoes. I only see their child at school. I only know what their child does in one environment and I understand well that students will present differently in different environments. I will encourage bridging to home; I will provide support; I will provide information and data. But I will not judge, because I do not, I cannot, really know.
Emma's Hope Book 