AQUARIUM: FISHY?

At G’s last IEP meeting, someone suggested he join a Social Skills/Pragmatic Language group that was starting nearby. If you are a parent of a child with differences (or a child with interests for that matter), you know how expensive activities (therapeutic and non-) can be. The fact that this group was FREE, because it was somehow part of a graduate program, caught my attention. I signed G up pronto. So far, we have been to three meetings and G has really enjoyed them. The boys (all boys…) play games and build things together and practice learning about each other and asking one another dialog-producing questions. Maybe the best part of all is the lack of eye-rolling: no one in this group has that developmentally-appropriate, neurotypical tendency to roll their eyes when someone acts “different.”






During the last meeting, the director of the program came into the waiting room and informed us that we were welcome to “watch the group” through a one way mirror. Apparently, this had been an ongoing activity for the graduate students and faculty involved, and was now an option for parents. I joined some students (and/or faculty) and other parents behind said mirror as they watched the meeting. It felt a little bit like looking into an aquarium. From time to time, people would comment, stuff like, “Oh, watch him, he’s really communicating,” or “Fascinating: watch how he…!” Several were taking notes.






I felt like the children were specimens in that aquarium. Without being ungrateful for the pleasure and – perhaps – learning that G was gaining from the group, as well as for its being free of charge, for the very reason that it was “educational” for graduate students, I nonetheless felt both creeped-out and horrified.






I didn’t want to undermine the class by making G feel funny about it, and I support the program if the participants find it beneficial. So I sent this email to the director of the program over a week ago:






Dear [program director],


I hope this finds you well.


I was a bit uncomfortable watching the kids in that context and wondering what you tell THEM about the window/mirror? If it's not too much trouble,


Sincerely,


[Full Spectrum Mama] ([G]'s mom)






I haven’t heard back.






I am all for scientific research, whether around health, genetics, disease, sleep, diet…autism…It can be informative, fascinating, and helpful for those who need or want help (this latter is a key distinction). As an academic, I can on some level understand and even accept that we need real live autistic people to learn about autism. Same for “autism awareness” (April is Autism Awareness Month), in that for people to accept autistic people as equal fellow human beings it’s perhaps best to get to know – in a non-awkward or –contrived or -condescending fashion – a real live autistic person or two. Shouldn’t be too hard what with the new statistics, right? …RIGHT?






Let’s also assume that everybody’s heart is in the right place in all of these endeavors from the Social Skills group to the folks who tout “Autism Awareness” to those who are skeptical thereof…






My not wanting G to be a “subject” of study could be NIMBYism, except – I like G just the way he is. In other words, I/we are not looking for scientific findings that will show us how to make G “right” or “better,” he's just practicing hanging out with some kids. His IEP team felt he needed help with social skills, this group came up, G liked it, end of story.






As a mother, and as a person on the spectrum myself, I can’t shake this de-humanizing aquarium image. And I can’t help but feel that if this kind of observation is "normal” there are some other groups I’d rather see put in an aquarium. Politicians, in general, come to mind. Abusers. Bullies. Mean people. What makes them tick and how can we cure them?






To be continued when I hear back from the program director…I hope.






Love,


Full Spectrum Mama

ON WRITING

In all of my classes, especially those on ethics, I teach students about the decision-making processes we must undergo as philosophical thinkers addressing issues and making choices. One of the key pieces of this process is a model I use as a sort of flow chart for figuring out what we know and do not know about a given situation. Presumably, these different pieces of information will combine to give us a more holistic approach to solving the wide range of conundra we broach in class and in our lives.

Some of the questions in the model include:

            What are the facts in this situation?

            What information is missing?

            A la Donald Rumsfeld, are there "unknown unknowns," i.e. things we don't know that we do not know? (Of course there are, sweetie!)
         
             Insofar as we can determine them, what are the assumptions and biases involved?

Are there unconscious assumptions and biases at play as well?

            Who holds the power? Who gets to make the decisions about, on the one hand,

possible courses of action,
             and, on the other,
which information is available/public/”true” vs. which information is privileged/private?    

        
             Who are the stakeholders? Who benefits? Who may not benefit – or be adversely affected?

        
             What is the heart component? How do the parties involved feel?

I try to use these questions when I write, much as I do in teaching.

As far as writing as a spectrum-y writer with my own particular quirks, strengths and weaknesses, I have to also ask myself where that might figure into the equation. For example, last week I attended an “Autism & Asperger’s Expo.” I ran into a colleague there and he looked puzzled to see me. I explained that I have a son who is on the spectrum and who was attending a Pragmatic Language/Social Skills Group located in the same building. At this news, he looked, so far as I could tell, shocked and dismayed. But, as I had barely recognized him in the first place (see: prosopagnosia), I certainly cannot trust my assessment of his expression. I do know for a fact that he said, quite appropriately, “I didn’t know that” – and that’s all I can reliably report.

In another instance, I had incomplete information and told a story that was based on the information I had that in the end was not true to what had actually happened due to missing infomation. This post, about a family who seemed to have been inadvertently “outed” as having an autistic member, really resonated with  people and parents with a variety of personal and family differences as a common aspect of our lived experience. What had actually happened emerged as slightly but significantly different from what I had reported. The server in question, who happens to read this here blog (? I feel honored!), had mentioned to Pardner that – actually! –

1.                          the Dad of the family had been distant, detached and fidgeting with his iPhone most of dinner (therefore he was not suddenly alienated in some way by feeling labeled), and

2.                          the family had itself volunteered the name of the school the son was visiting (and therefore the server had not presumed).

I was chagrined. I spoke about it with a few people, all of whom said stuff like, “Oh, the story’s so true that the facts are almost irrelevant,” or “It’s all relative, anyway.” I (lovingly) disagreed. While it is true that families and individuals with differences can potentially have relatively more challenging interactions than “normal” people, and that this may well have been a painful experience for said family for whatever reason, what really happened really does matter. I take it as my responsibility to make that very clear, in this scenario and beyond.

Information is always partial. As writers, we know this fact full well. Some non-fiction writers even embrace it in pursuit of polemical points. This partiality of knowledge holds for all writing, including that which is considered “objective.” At the same time, I do believe in Truth. There can be unknown or temporarily-disputed facts, and different perspectives on the same truth, but I am not, never have been, never will be a relativist. I am always happy to clarify, or to add other perspectives, whether or not they are in tune with my own, so long as they add to the truth and honesty of a piece. In short, I, along with most writers I respect, aim our endeavors toward truth, at some times getting closer than others…

In this case, the parties concerned were totally bighearted about my getting it not-quite-right: I believe the server’s actual words were, “Oh, I get it! I just don’t want you and [Full Spectrum Mama] to think I am an insensitive bimbo.” Heck to the no.

So, because I know it’s just what everybody was waiting for, I have developed a model for writing creative non-fiction that suits my goals for integrity and transparency:

                              Figure I – Venn Diagram of Ideal Non-Fiction Writing Composition

Full Spectrum Mama is an Anonymous blog, with the vast majority of readers reading from afar. Yet I believe there is a sort of trust inherent in the blogger-reader relationship that I would never intentionally violate by deliberating lying or writing with bad intentions. So I have also crafted this handy diagram of unsavory elements that are never welcome in this blog:

 Figure II – Relativism and Known/Intentional/Conscious Bias en route to Finding Another Blog to Colonize

Love,

Full Spectrum Mama