a parliament of owls

life with asperger's

Tag: diagnosis

They’ll Slap a Label on Anything: On Teachers’ Responses to Autism in the Mainstream Classroom

I recently attended a conference for teachers in my field. Walking to a session with a teacher I’d just met, we were talking about some of the common difficulties in the classroom. She mentioned teaching to special needs students in the mainstream classroom and began to elaborate. There are so many kids diagnosed with ADHD these days, she said. And then there’s autism. There’s more kids they say are autistic now. I don’t even know what that means. They’ll slap a label on anything.

She did not know that she was talking with an autistic who has a freshman son in high school also diagnosed with autism. I did not enlighten her. I gave her some information about recent research that suggests there aren’t more autistics but more people who would have received other disability diagnoses being placed on a broader spectrum (see, for example, here with a popular summary in context here). This is, I explained, in an effort to refine our clinical definitions and associated interventions, so that we can describe developmental conditions more accurately and provide better help to those who have them. She didn’t respond, and we had arrived at our destination, so I didn’t know whether this was having much effect. I hope she will reflect on it later.

This teacher was obviously someone who was investing in her own professional learning by attending the conference, and she seemed well meaning. However, she is also a veteran teacher who must have had many autistic students in her classroom over the years. I have to wonder how much harm she has done by dismissing their diagnoses as a fad. And I had to reflect that maybe her discomfort wasn’t in accommodating ADHD or autistic students so much as being asked to adapt her approach in the classroom to individual students. The best teachers I’ve know have always done that as a matter of course, as much as possible and practical.

Over the years, in helping with my son’s educational progress, I’ve only met one teacher who explicitly rejected autism as a valid diagnosis: his fifth grade teacher, Mrs. R. Although she didn’t ever tell us so directly, it became apparent that she felt he was some kind of repugnant, anti-social creature. His abnormal social behaviors disgusted her. She called in the school psychologist to assess him, and convinced her that he was also anti-social. Neither of their descriptions of our son matched our understanding of him or that of other teachers from his earliest years to the present. I understood this fifth-grade teacher was highly socially conventional. When our son did not internalize or follow social cues, she became alarmed. He would get up during work and pace across the room once or twice before resuming his labors. If someone bumped into him by accident, he reacted with upset. Instead of interpreting his behavior as an absence of social awareness, or as a need to deal with sensory issues, she interpreted his behavior as deviance and defiance. Our mild, cooperative, quirky, gentle, funny child is neither of these. Once we explained this to the principal, who knew our son better, she intervened with the teacher, and the rest of the school year went better. It didn’t help that this teacher’s son was in the same grade and same band class as our son, and had bullied him from the first day of the school year. I could not help but assume that her child had internalized her rigid adherence to certain social norms.

Having taught college for twenty years, my heart goes out to teachers. Teachers in public schools teach too many classes filled with too many students. We can’t expect them to understand every diagnosis their students have or to be able to adapt their teaching style, method, or materials to every student difference in the regular classroom. I’ve been impressed over the years with the commitment and care of our son’s teachers. They have all done their best in difficult circumstances, even the fifth-grade teacher who misunderstood our son. She was trying to get him help for what she saw as a disturbing deviation from the norm, and she was trying to create a positive classroom atmosphere for her other students. As our son’s advocate, I had to press for a different response and I had to seek to educate an educator, which is never a comfortable position for a parent-advocate. I’ve had other moments when I’ve had to educate teachers about autism. Despite their experience with many children on the spectrum over the years, even the most well-meaning teachers often haven’t had time to focus or specialize in kids on the spectrum. They don’t understand it from the inside, in depth, although they are sometimes sure they get it. Their surety about their knowledge of autism can get in the way of working with individual kids on the spectrum even when they do accept autism as a valid diagnosis.

In the eighth grade, with the advent of Common Core State Standards in our state, our son’s math teacher became committed to collaborative learning in general and to cooperative learning groups in particular. Mrs. C became so committed that she designed her classroom around learning groups every day, all day, for two math periods each day. Individual desks were replaced with group tables. The teacher walked the room the whole period, but attempted only to facilitate as needed; the kids ran the show.

Cooperative learning groups are the kind most often recommended for kids on the spectrum when they do work together. They feature structured roles, with each student assigned a different part to play, and specific goals. This helps kids on the spectrum know what is expected of them socially and provides some scaffolding for interacting with peers. However, the amount of social interaction was far too much for our son. He had no time for working quietly on his own, no time away from social demands, and little support for interpersonal conflicts that arose in his groups. When the teacher was called over to help resolve these, she would assure students they could work it out on their own. The kinds of interpersonal conflicts my son encountered are typical of group work among students in the eighth grade: other students who won’t stay focused on work, who are sure they are right and the rest of the group is wrong, who are in a bad mood that day, and so on. Among the range of social deficits kids on the spectrum have, conflict resolution is one of the most prevalent and the likeliest to produce significant stress. The teacher attempted to help our son by switching up his groups and eventually allowing him to have a friend in his group. None of these solutions, though reasonable, were sufficient long term, because the interaction was unceasing and intensive. He was encountering increased group work in other classes as well as part of the Common Core approach, which added to his overwhelm, but math class was the most relentless.

Two-thirds of the way through the school year, our gifted, motivated son became so distraught that he began to exhibit school refusal behavior. He had fantasies about getting up and walking out of the classroom and of leaving the school and refusing to come back. This “wandering” behavior is typical of autistics, especially those from their tweens through early adulthood. It is a maladaptive response to stress that can endanger the individual, but it is a response that helps the autistic, who often has difficulty identifying or describing emotions in the moment, to distance him or herself from real ongoing harm. Our son is a homebody and anything but a risk-taker. I understood his talking about this as a serious symptom of something going very wrong. He was becoming increasingly depressed from having to go back to school each day and was desperate to escape. If he and I had not had such a close connection, he might have just done it instead of telling me about it.

Mrs. C was not only a veteran teacher but also a highly accomplished one. She was a master teacher. She was also certain that collaborative learning was the best learning method for all students and that she understood what students on the spectrum needed. She herself, she said, had autistic traits, and she had a nephew on the spectrum. Yet, what she was doing in her classroom was harmful or our son, and she could neither see it nor respond to it appropriately. We were clear all along that we wanted our son to be challenged. However, challenge also needs to come with reasonable accommodations and supports. These accommodations and supports sometimes fall away as the child develops, and sometimes need to be added as the learning environment and expectations change. Educators must always remain open to learning about the nuances of disabilities in learning, and especially to assessing how new methods that benefit most students may introduce new challenges for some.

In the case of our son’s math class, we had to call a new 504 meeting and adjust his plan so that he has the ability to opt out of any group work. I brought a quantity of research about group learning and autism (it is not a recommended default method and needs to be handled with awareness and care). His math teacher fought this bitterly, and even later, following the new plan, pressed him passive aggressively in the classroom to continue group work. We asked the principal to intervene, and she did, asking the teacher to leave our son to his individual work when he chose that. When the pressure was off, he often chose on his own to participate in group work. Being able to withdraw when absolutely necessary saved the school year for him. I have come across Mrs. C since, as recently as the homecoming parade. She refused to look at me. I suspect she feels we seized control of her classroom (at least one chair of it) and overrode her professional expertise (albeit in this single matter). I am certain we saved our son from further harm. He has told us if we had not intervened on his behalf, his trust in us would have been undermined, and I believe him.

The best teachers our son has worked with over the years have been those who accept a range of differences among their students, even when they don’t have a label for these differences or receive notice of a recommended intervention to which they are asked to adhere. From our son’s earliest grades in school, he has had teachers who recognized when he was about to have a meltdown and practiced a brushing technique to sooth him, or who saw he needed to sit near the front of the room away from social distractions, or who learned that he liked to share information with others and gave him an ability to present what he knew while excusing him from the stress of wearing a costume or talking about his feelings. These teachers seem always to find the ability in our son, to find ways to elicit that while also supporting his discomfort with group expressions or personal ones. They have understood that being uncomfortable or unable is not defiance or deviance, but difference, and they have been willing to accept and work with that difference toward learning goals. These teachers have shown generosity and humanity in their practice, when they have known and understood how to work with the label and even when they haven’t. The label isn’t what really matters, anyway–it’s the teacher responding to each student according to his or her needs, being willing and able to assess, reflect, and adjust. These are teachers who do not mistake fairness with sameness, and who have developed the capacity and the patience to make a practical difference.

Claiming Asperger’s

Many people are wondering aloud these days about why they are hearing so much about autism in general and Asperger’s in particular. It’s legitimate to question why, and whether it’s always been around and in such prevalence. In March of this year, a new U.S. government report claimed that 1 in 50 school children are on the spectrum, higher yet than the 1 in 88 reported in a different report the year before. The March report was based on 100,000 parent surveys, which may be more suggestive of increased diagnoses and request for services than an increase in actual numbers of cases. Even so, the relatively large number of diagnoses raises the concern that autism spectrum disorders are a fad. Within the high-functioning autism community, one effect of this concern is that officially diagnosed autistics or those who love them go after those who are self-identified.

I am a self-identified high-functioning autistic. I do not yet have an official medical diagnosis, although my son has been officially diagnosed. As I describe in an earlier post, I first came to realize I share his diagnosis during the process of developing it in cooperation with staff at a local university psychological services center. I’ve tested this against the Baron-Cohen Autism Spectrum Quotient, which is a diagnostic inventory developed at the Autism Research Centre at the University of Cambridge; it’s so popularized now, it’s even appeared in Wired. Any score of 32 or higher is suggestive of ASD. I consistently score over that. My last evaluation two days ago placed me at 36. I’m now in the process of seeking a medical diagnosis, which I have put off because I had not needed it previously, being well adapted to work and life in general. Besides, achieving a diagnosis for a developmental condition like Asperger’s is no quick feat. It means an initial hour consultation followed by four two-hour testing sessions, as well as completing a long self-assessment questionnaire. And it’s not free; I’m fortunate to have the means to do it through employer-provided health insurance.

It can also be difficult to find a clinician who has expertise in and the availability to do adult Asperger’s assessments. Most clinicians are geared to assess children, which is understandable given that it is a developmental issue that can impact academic success and psychosocial progress. Those of us who seek adult diagnoses now were raised in generations when there was less clinical and social awareness of high-functioning autism, and certainly even that much less awareness again that females might be so diagnosed. Males are still much more frequently diagnosed (at a ratio of 4:1 with autism in general and 9:1 with Asperger’s), perhaps in large part because the main diagnostic criteria for Asperger’s was originally based on cases of boys alone.

Temple Grandin, now a famous instance of a woman with Asperger’s, as well as Judy Endow, an advocate on the spectrum, have both made progress in dispelling the myth that high-functioning autism is a boys’ club. Good work has also been done in recent years on the differences between male and female high-functioning autistics, especially by Tony Atwood. It’s in reading Atwood’s work on girls and women with Asperger’s that I had once again that shock of self-recognition I had experienced during my son’s diagnostic process. Once again I realized that so many of the characteristics I had thought were unique to myself were shared by others on the spectrum, this time female others.

Here’s one striking example: Much has been made of boy’s Asperger’s culture revolving around obsessions with trains, legos, and video games. My own son, now 12, continues to be absorbed in video games and, when he was younger, shared an equal absorption in trains and legos. People outside of the high-functioning autistic community might be quick to say that all boys tend to like these things, but the distinction is in the degree. Boys on the spectrum often show an interest in trains, legos, and video games to the exclusion of any other forms of play (except perhaps other mechanical or construction sets), any other kinds of interests (except a limited number of other obsessions, such as construction machines or insects or extreme weather phenomena), or any other topics of discussion. Girls on the spectrum, according to Atwood, often project themselves into reading, instead, and especially reading in the genre of fantasy. He reasons that girls on the spectrum find power in fantasy, identifying with characters who overcome through their special abilities, as well as finding in fantasy worlds a safe haven from social anxiety. By the time I had finished middle school, I had read Tolkien’s Middle Earth works, including the Silmarillion, seventeen times. I had read his letters and many books on his work, the myths on which they were based, and a biography. I had even kept an encrypted journal in Elvish script. And then, years later, there was a doctorate in British literature with a specialization in fairy tale and fantasy literature. In one of his books, Atwood even names literature professor as a common and effective career choice for women with Asperger’s. My hands shook when I held that book, reading what I had always taken to be the happenstance story of myself told with unlikely accuracy.

I can understand the desire of those already diagnosed with high-functioning autism to want to protect the value of the diagnosis from seeming to apply to everyone who has social anxiety or introversion or a certain nerdy or geeky turn. There seems to be some confusion about how these other qualities differ from this specific developmental condition, which can itself present in subtly nuanced ways across personalities. But I also think it’s okay for people to wonder if this diagnosis applies to them, to be Asperger’s curious or questioning, to use an analogy to LGBT culture. And I think that for many and maybe even most people, the journey to accepting a diagnosis is not an easy one, not when the diagnosis is understood as a potential set of costs as well as benefits. Eccentricity may be charming in short bursts, and adopting an eccentric pose may be fun in certain circumstances, but to be an eccentric by neurological fiat when one desires to be accepted, liked, and even unremarked and remarkable is an uncomfortable thing. There may be those of us on the spectrum who ultimately wear the diagnosis as if it were a badge of honor, who might take it as a point of pride to be different and therefore special, but this is itself an act of bravery and perhaps of defiance from those who have no choice but to live on the social fringe.