The Future Horizons Superconference in Dixon, Illinois July 22-23, 2010
Written by Julia Bramsen
The next day, as always, ridiculously early, I arrive for the first session at the massive, old theatre on the main drag. After registering across the street at the former post house, I choose a seat in the venue front and center. My insufficient dosage of betablockers and I, didn’t come all this way not to see the speakers. Unfortunately, even though I am wearing the one pair of khakis I’d brought, I find myself slowly turning to ice crystals, between two mammoth air conditioning wallvents expelling a 10 mph polar wind. I weigh my various options, and decide to hold my position. I am nothing if not stoic. My pretraining in stoicism having sprouted in the crib.
During the hour, or so, before the presentation begins, the theatre gradually fills with layer upon layer of hundreds of individual and simultaneous conversations. Sound comes from every direction, from every angle, at every pitch, with rivulets of visual images, and debatable points, and emotion laden subtext, embodied in, or clinging to, or tagging along behind in vagrant fashion, the rollercoastering volume of this band practice in hell,…. to which I am accustomed. But, I hate it. No exaggeration. I hate all of this sound. Yet, if one is to live with the sensory majority, as we all must, one has no alternative, but to adapt, and accommodate oneself to flattened sensory systems of the neurotypicals around one. My ever present auditory issues, are at their worst in this type of environment. Additionally, there seems to be a correlation of some kind, between stress hormone levels and spikes in sensory issues. Apparently, this will also be true at an autism conference.
I recognize the first presenter, Dr. Jed Baker, when he arrives to set up and check sound levels. I recognize him, despite my mild prosopagnosia, because, well, I expect to see him, but also, because I have watched all available online videos, and read nearly all the extant books written by all four of the conference presenters. When one’s experience of life from the beginning teaches one that surprises are typically unpleasant, by middle age, one could teach a course on over preparation. Unfortunately, while filling time before the program begins, Dr. Baker decides, or is prompted by his publisher, to promote a CD of recently released children’s music. In order to do so, he plays the music at high volume above the noise of the gathering crowd. The songs are both loud, and maddeningly, incessantly repetitious, of the sort one might hear playing in any kindergarten. It is nearly too much.
For distraction, I flip thru the sky blue covered conference hand out, and eventually arrive at the evaluation sheets at the very back. There is one for each day. Near the top of each, is one of those “tell us about you questions”. The question has 9 categories that one might check to describe oneself in the context of the conference: parents, teachers, social workers, therapists etc…I realize that I, as an autistic, will have no other choice but to check the bottom category, labeled ‘Other’.
The conference begins with Future Horizons publisher, Wayne Gilpin, acting as master of ceremonies. The local mayor speaks briefly. He deservedly brags about the newly refurbished riverwalk, enjoins us to leave our money in Dixon, and then is never seen again.
Child psychologist, Dr. Jed Baker, offers much sane and sensible advice to parents and teachers based on observations and assumptions derived from the mostly young, male population with whom he works. Most of the audience is here in this old, cold theatre to listen to advice about managing, and helping precisely this subset of the spectrum. I suspect, that much that is said by Dr. Baker will prove to be helpful to the audience. However, it is also abundantly evident from the earbleed volumes, and sudden skyrocketing pitches, of the video clips he plays during his presentations, that while he might be able to talk for days about sensory issues; he does not, yet, understand them.
During his second session, Dr. Baker says …”we must teach our autistic kids, that they have no right to impose on others”. So true. However, the subject calls out for much further discussion of how imposition is possible in both directions, and whose needs are to take precedence, and when, and how this is to be determined. A subject, best left for another day, perhaps.
There was only one part of Dr. Baker’s program which really gave me pause. This involved the peer inclusion aspect of his social skills school program. Perhaps, you’re familiar with this one already. The identified kid is removed from the classroom, and a teacher, or school psychologist, or whoever, leads the rest of class in a discussion about the autistic kid’s differences. According to the program, both similarities and differences, are discussed, as are strengths and weaknesses. Then the classmates are encouraged to brainstorm about how they can help the autistic adapt and to be socially comfortable. Specific suggestions are made, and perhaps friends are formally assigned, perhaps, from volunteers. Okay, good stuff, and doubtless, well intentioned. And if you tell me this has worked for some autistic kids, I will believe you. However, labels have no nuances, and all elementary and middle school teachers are not necessarily paragons of careful, flexible thought. It occurs to me that no matter how many conditions might be written into a social skills training program, nobody actually reads warning labels.
It is likely that if, in elementary school, I had run into a teacher who had my name on a classlist with an autistic label attached to it, and a recipe book in hand entitled, “7 easy steps to making your work environment more bearable, including recipes for managing kids with autism,” had I, after trying my damnedest to fit in, (or at least, not stand out so much that I’d be made to pay for it, yet, again) been made to be leave the room while my classmates discussed my social deficits, and were taught to think of me as the classroom’s little inhouse social charity case, it is no exaggeration to say, I might have gone home at the end of that particular school day, and hanged myself.
I think it behooves us, or rather the experts, to include an awareness of the differences which pertain to girls on the spectrum in the creation of their program models. Those 5 steps, or 7 steps, or 21 and a ½ step programs which are said to lead by direct route to classroom tranquility, ripple ever outwards, going we know not where. After all, we know why women were, at last, finally included as subjects in medical research and models. Before this inclusion, women were routinely misdiagnosed, mistreated, and tragically, some died. Obvious, one would have thought, but if I have learned anything about the neurotypical population, it is that one can never assume that they will generalize about basics that do not apply to them.
Dr. Baker describes the aim of the program as having two components. The first, is to assist kids on the spectrum with their social challenges. And the second, to teach neurotypical kids to understand, and even help their atypical brethren. The other aspect of this particular program which seemed to me to be essential, and yet distressingly absent, was demonstrated by one of Dr. Baker’s own video clips. In the clip, a sweet, young, Aspergian boy named Noah speaks of the difficulties he faced at his last school, and positively compares his current improved situation where his peers have apparently, received “sensitivity training”. He calls his new school, “heaven”. Then, Noah’s bright, new classmate is interviewed. She’s positively gleaming from the attention, and a sense of her own virtue, as she confidently announces to the camera, that Noah isn’t like me at all, but that common conversational turf can be found.
If neurotypical kids are going to be included in social skills training programs, it seems to me, that they really ought to be taught about themselves, as well, and specifically, that they might be tempted by the siren song of ego. Do we want to teach the neurotypical children a modern version of what my Aspergian paternal grandmother, who came of age in the 1920’s, would have unselfconsciously referred to as noblesse oblige, and what I, during my brief sojourn working in community mental health services, privately referred to as “social worker syndrome”, which is the unspoken belief that those who give assistance are superior to the receivers of assistance. To give to others out of generosity is one thing, to give self-consciously in full awareness of the weight of one’s wings, and the blinding light of one’s own halo, is an addition, which changes the gift. We do tend to judge other people’s abilities, (and extend that to value judgments) based on what we ourselves do best. Social worker syndrome is found here and there, within all fields of professional and unprofessional nurturing. We all need to understand ourselves. This applies just as much to neurotypical kids as those on the spectrum. Unfortunately, some of those who will be teaching this, or any other program to school age children, are likely to be among those least able to impart this particular brand of self-awareness.
After Dr. Baker’s program, I do not follow the crowd out to lunch and music on the riverfront, but instead head straight to the Wal-Mart next to my hotel, and buy the warmest, least aesthetically repellent sweater I can find in July. Back in my burgundyesque hotel room, I turn off the air conditioner, eat a navel orange, and try to calm my touchy amygdala in the quiet, still room, while pondering the temptation not to return to the theatre.
Back at the venue, the afternoon speaker is Dr. Jim Ball, an energetic, personable man, with the physique of an athlete, and the personality of television host. He speaks about early intervention, and then social skills training covering much of the same territory as the last speaker. However, he addresses this from a more strictly behaviorist perspective. Dr. Ball also gives one mention of sensory issues, when he says, that ‘they are probably going to go back on all that,” and I’m not at all certain what he means by this. However, it does cause me concern, but then, what does not?
I sit in one of the back rows, with my bad attitude, and my sensory overload, and my ugly new sweater. And I listen , as one negative stereotype chases the next across the stage. Autistic kids this, kids with Aspergers that, little of which fits who I was externally at that age. Eventually, I begin to feel like it might be 1958, and I am an African American sitting in an audience watching as white men pace the platform, while confidently holding forth on “the race problem in America”. A little over fifty years later, we have an African American president, and live in a culture where an ethnic group which was once undervalued, and underestimated is now seen as equal. I suspect, many autistics also have a dream, and it extends beyond the global appreciation of the internet.
However, individually, we can only describe the elephant according to the bit we happen to get hold of, which is only to say, that by definition, every human perspective is incomplete. In his presentation, Dr. Ball does mention that the girls pick up the social skills training faster than the boys. However, this is then followed by many male derived stereotypes. Doubtless, he might later say many splendid and insightful things, that the parents and other teachers of autistic boys, need to hear, but I am worn thru with this day, and do not return from the next break.
The second, and last day of the conference begins the world’s favorite autistic, Dr. Temple Grandin. While much of the contents of her presentation is already available on youtube and Ted Talks, for me, the pleasure of listening to Dr. Grandin whether live, or online, is the certain knowledge that she will never ever, say anything, that comes as an unpleasant surprise. She is always clear, pragmatic, and cleanly logical. I know she will never casually traffic in negative stereotypes, and she will not forebear untoward noise. I could happily listen to Grandin for days. Her logic relaxes and soothes me like a lullaby. Ah, sweet, nondistressing logical thought. When Dr. Grandin speaks, surely that soft, tiny purring in my midbrain must be coming from a happy amygdala.
She began her talk by giving the audience a demonstration of straightforward self-advocacy, which is to say, she stopped her presentation in order to quite matter-of-factly, tell a woman in the front to stop fanning herself , because the motion was a distraction and a derailment. So, we were all on our very best behavior, from that point on. Unfortunately, as neurotypicals don’t, yet understand the issues involved, they are unable to generalize this good behavior, and the minute Dr. Grandin left the stage the fidgeting and fanning, and the chair kicking and the noise level all came straight back.
Information is information, and is available in many places. The two most important things Dr. Grandin does in the public sphere are, I believe, to first, show a clarity of intuitive insight engendered by having a similar perspective on these issues, as the autistics being discussed. As well as, and perhaps, even more significantly, she demonstrates an uncommon decency, and generosity of mind, and service to the autistic community that rightly deserves everyone’s unconditional gratitude.
Dr. Grandin, as all good speakers must, had a plane to catch, and was soon followed by Future Horizons’ other heavy hitter, the Aspergian community’s BFF, Dr. Tony Attwood. Personally, there’s no neurotypical working in the field of autism that I admire more, and his presence at the conference was the primary reason that I was there. The conference in Dixon was his last stop on a long summer tour before returning home to Brisbane. He spoke for three sessions of an hour and half each, and spent the breaks talking individually to an unending line of parents and professionals. He must have been utterly exhausted, but it wasn’t visible.
As a demonstration of endurance, it was in itself remarkable, but the reason I ignored my mazeophobia, and made this trip, was to have, what was for me, the singular experience of hearing a speaker in a public forum describe me. Having spent my adulthood in an uncomfortable awareness that my culture does not reflect me, back to me, and also, aware that I am not included in the generally held model of humanity, I know, I am unknown and unseen by those around me, including members of my own family. Having read his books, I believed that Dr. Attwood could give me the experience of hearing someone else give an accurate description of me, to me. Just this is what I had come for. No song, no dance. Just accurate descriptive words, spoken aloud, this would be enough.
And that is exactly what he did in speaking specifically about girls and women on the spectrum. He spoke my history, and my secrets outloud. He defined my coastlines, and lingered in my deserts. And, it was all very, very painful. Surprisingly, I hadn’t counted on that. I had to repeatedly fight to retain control of the tears puddling in my eyes. I did not want to flee, but I ached for invisibility. This was one of the most significant and unusual experiences of my life, which is why I would be willing to pay large sums of money not to have to say the following.
If this had been a trivial mistake, I would not mention it. ‘Cause as we know, there’s just nothing worse than a trifling, nitpicky Aspie. And if there is one person out there who I would prefer never to disagree with, it is Dr. Attwood. However, this was a rather bold, and potentially harmful error, or so it seemed to me.
Towards the end of his presentation, Dr. Attwood, in describing what it’s like for an autistic kid having a classroom meltdown at the point where the vice principal comes in to manage the situation, (and here, Attwood smiled and apologized in advanced to the autistics in the audience for what he was “about to say”), as if to convey what the kid’s experience of the vice principal was like, Attwood then yelled into the microphone. I convulsed like I’d been hit by a two by four. Imagine a auditory punch. In contrast, the audience giggled at the sudden loud noise, because they had been surprised, and perhaps felt a bit of a flutter in their tummies. Attwood walked on smiling, clearly pleased with his showmanship, but he was wrong if he was thinking that he had taught the audience about auditory issues. What they experienced, and what I experience are two very different things. The difference being, that sounds aren’t just sometimes louder for me. Sound can be painful to me. If you want to teach a neurotypical about an auditory spike, sneak up behind one, and blast an air horn directly into each of their ears. However, what Attwood taught the audience was nothing about sensory issues, but rather, that it is perfectly acceptable to yell around people you know to be autistic, as long as one has an excuse, for instance, a misguided pedagogical notion.
Intentional auditory violence is never okay. I don’t care who is doing it. It is simply never okay. No excuse makes it alright for me to walk up to you, and hit you in the face. Additionally, this lesson was given from a position of unquestioned expertise, and therefore great power. Let’s hope that Attwood was just very, very tired and temporarily lost his mindfulness. I’m still a fan. And overall, I’ve found the conference to be most interesting, and enlightening.
However, it is my belief, that as a community we are not, yet, anywhere near being in a position to afford the luxury of keeping sacred cows. Sacred cows are expensive, especially when they are going to speak for us. We cannot allow ourselves to be so desperately grateful for neurotypical friendship, that we do not hold our friends, even our BFFs, to at least minimal standards of respect and consideration.
When we as responsible autistic adults offend against neurotypicals, it is most often by accident. Certainly, the same can be said of neurotypicals when they casually offend against us. The placement of autistic participants, in the ‘Other ‘ category, at an autism conference, is just a stupid, but easily rectified mistake. However, for experts to treat autistics as ‘other’, at an autism conference, suggests that it is, indeed, very early days, for our community.
We are not lost, but we are yet, far from home.
As always, when girding myself to face a novel experience, (in this case, my first autism conference), I turned to the most reliable source of comfort and understanding, the internet. There I stumbled across a word which puts a verbal circle around something I’ve experienced since childhood, “mazeophobia”, the fear of getting lost. Like many of us on the spectrum, I have been lost in many, many interesting, and uninteresting places. I can, and have, for instance, gotten lost going around an unfamiliar block. Doubtless, this is a direct result of my topographnosia, or an inability to form a cognitive map. Even with a personal GPS, (which I’m still not entirely sure how to use) hooked to my keychain, it makes me loath to venture too far afield, unless someone else is doing the driving.
Shana Nichols, PhD, psychologist and former Clinical Director of the Fay J. Lindner Center for Autism, is pleased to announce the June 2010 opening of her new clinic, ASPIRE Center for Learning and Development, in Melville, NY (110 – LIE corridor). Summer programming includes: (read more)
There is a wonderful blogger I follow, Mae, who writes, Autism Is Not the Boss. She has written an interesting post ASD terminology: ‘autistic’ vs ‘individual with autism’ As usual, since I generally have alot to say, I commented on her piece, and we had an interesting discussion about my boys.
How would they describe themselves? Which vernacular would they use? The interesting thing about my boys, though, is that they would never even think to describe themselves in terms of autism at all.
The Proposed DSM-V Changes: Is it a Step in the Right Direction?
Written by Corina Becker & Amy Caraballo
Lately, the online communities have been talking about the recently released proposed revisions for the the Diagnostic and Statistical Manual of Mental Disorders, version 5 (DSM-V). The proposed revisions embody quite a few differences in the diagnostic criteria for disorders previously under the umbrella of Pervasive Development Disorder (PDD). Available onlinefor comment, the two main concerns appear to be vague wording of the diagnostic criteria and whether or not Asperger Syndrome should remain as a separate diagnosis.