See First

pic23What if a student was highly intelligent, perhaps even with stronger understanding of complex concepts than you and me, but was unable to speak or write or type. What then? How would we know? How would we see?

I recently had the pleasure of talking with wonderful parents of a boy who was considered to be nonverbal until he got his hands on a letterboard — a way to communicate that didn’t require fine motor skills. It turns out that he processes auditory information quite well, is very bright, and is now on a path to prepare for a college education likely in physics. That letterboard was a game changer.

His story reminded me of Carly Fleischmann whose inner voice could finally be “heard” by typing. The part about Carly’s story that stuck with me was her dad reflecting on how they used to talk about Carly with Carly in the room, as if Carly was not able to understand. He later found out that she was comprehending everything, and the regret weighed heavy in his voice.

These stories are awe-inspiring, but what about the more mundane stories out there?  There are so many other students who are being assessed by methods that are limited. The limited methods… limit our ability to truly “see” students for all that they are. This is more common than not. One of the problems with most school assessments is that they are limited to “paper and pencil”, or perhaps computerized, tests that required verbal-linguistic skills.

Why do we do this? It’s a cycle. Those who did well with verbal-linguistic skills, along with meeting other neurotypical expectations, are the ones who go on to become the test-makers and evaluators of the test results.

Now it is time to see beyond. The first step is gaining awareness through stories like Carly’s and studies such as the following:

Words Say Little About Cognitive Abilities in Autism by Nicholette Zeliadt, Spectrum News

Interaction Takes Two: Typical Adults Exhibit Mind-Blindness Towards Those With Autism Spectrum Disorder. Edey R, et al. J Abnorm Psychol. 2016

Note that second one isn’t about verbal so much as nonverbal, and the title caught several people by surprise when it was first posted. This reaction shows how pervasive our preconceived filters can be, including in how we frame our research.

To quote Douglas Adams, “See first, think later, then test. But always see first. Otherwise, you will only see what you were expecting.”

 

Person First vs Identity Labels: Which Do You Use?

HELLO_I-amIn an autism awareness conversation, the question is asked, should we say a “person with autism,” or an “autistic person,“ or an “autist?” How about an “Aspie” versus a “person with Asperger’s?”

My take: whatever that person wants. Not everyone agrees with me on this. Yes, it can get confusing, and it’s hard to keep track of individual preferences. A large number of people believe we should adopt the one, best way and stick to that. But what is that, and who gets to decide?

A pattern emerges on whether or not “person first” language is preferred (a person with ___). If the person sees the label as part of his or her identity or sense of self, then wearing the label is more likely the choice; if the label is seen as an unfortunate condition or burden, then it is more secondary to the person.

Sometimes it doesn’t matter. For example, you could say that I am a person with synesthesia, or that I am a synesthete. Since the implications of synesthesia are typically considered benign, most synesthetes are fine with either phrasing.

Other times, it does matter. A person with gastro-intestinal disorder, meanwhile, would likely find it absurd to be given an identity label for this (and what would that be? A gastrite?). On the flip-side, a person who identifies as an Aspie might find it undermining to be called a person “with Asperger’s”, or even more so “with autism” if being an Aspie is part of his or her core identity. It can feel similar to saying one has an ethnicity versus is an ethnicity. For example, I will say that I am Celtic, but that I have other ethnic heritages that are part of me genetically but less of my identity.

This pattern isn’t perfect. People have varying opinions about whether a condition or set of traits is a “disorder” and even those would who label it as such might still see the condition as part of who they are and own that identity. It can also serve as a way of seeking camaraderie and support from others who share the label. An example of this would be the term Lupites for people with Lupus, which has caused some amusing confusion among roleplaying gamers. I don’t know of a single person with Lupus who would choose to keep the condition, but it can definitely define a person in profound ways, and a tribe of others sharing that label helps.

So what can you do to make sure you phrase things to never insult anybody? First, I’m pretty sure this is impossible. We can, however, do our best while also being patient with each other in the process. I tend to use the pattern described above, which relies on my biased perspectives. I then adjust when I realize the predominate preferences of a group, and then adjust again for individuals regarding their own personal identity.

It’s not a perfect solution! What are your thoughts on this? Do you have any strategies to suggest? What about examples from your own experiences?

 

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Aspies Don’t Lack Empathy – Just the Opposite

Art work by Aegis Mario S. Nevado

Art work by Aegis Mario S. Nevado

A common trait that people associate with Asperger’s is the lack of empathy.  This misconception could be due to “normal people” lacking the ability to empathize with Aspies.  Chew on that irony for a moment.

First let me give you two sources who can explain this idea better than I, and then I will give you a glimpse into my own brain.

This has been an emotional topic for me. I am neurodivergent, and my world is rich with sensory perception sensitivity, compounded by forms of synesthesia and living as an empath. Sometimes I feel so much that I have to brace myself. It’s not just my own emotional and physical feelings, but those of others. If I care about the person, it’s intensified, but even a stranger’s emotions can touch me. And I mean touch me — where I am feeling the joy or anger or – sometimes – physical sensations that are supposed to stay put inside of that other individual. Add in synesthesia, and my eyes can strain from the changing lights that surround each person.

If I ground myself against the emotions, or motion with my hands as if to push away the feelings, I can come across as uncaring. Sometimes I have to the leave the room, regroup, and come back prepared for what I am walking into.  And sometimes I even feel anger and hurt at being assaulted by that other person pushing his or her emotions onto me, worse when there’s a demand that I only listen and “take it” instead of letting me try to fix it, to eliminate the source or to heal the person so we can both stop hurting.  However, sometimes it is important that the person go through that whole process, and it also isn’t always my place to “fix” anything.  Luckily there is a way I can meet this need without such harm to myself.

When allowed to be who I am and to use the strategies available to me, I can be my most powerful self – the self who is loving, nurturing, mentoring, healing, and creating.  It just needs to be on my terms, and – with the help of others able to empathize with me – I am learning what those are.  For example, I have honored some requests by parents to advocate for their student in a public school, and this usually involves sitting in a room with emotions running high from the teachers, parents, and especially the student, making sure everyone’s feelings and needs have been heard and understood. I can calmly direct that conversation with a balance of using empathy to guide me but, as far as people in the room can see, a gentle but solid power. They don’t know I’m trembling inside as I take each blow. If I weren’t allowed to put on my armor beforehand, I wouldn’t be successful.

A former boyfriend once described it this way. He sat across a table from me as he expressed anger, and then apologized when he realized he had been mistaken – a fact I knew the whole exasperating time as I tried to “just listen” to him, as he insisted, instead of eliminating the source of his hurt, which I finally did by saying a single sentence.  He described my demeanor during it all as calmly keeping multiple swords sheathed at my belt – a power kept in check. What he didn’t realize was that those were swords I kept collecting from him, sheathing them one by one in an effort to keep us both from being hurt. Either he was going to let me get a word in edge-wise or I was going to (figuratively) whack him over the head with the next one that came my way. Which pretty much describes our breakup.

I’m a messy empath, but I have learned much. The relationship noted above about killed me but served as the catalyst for me to become stronger and a better partner for my current relationships – all of which are a source of loving support and inspire me to be a better person. They are self-aware individuals who value the same traits that befuddle neurotypicals. It finally occurred to me that I had to be picky when it came to dating (and shouldn’t everybody do this for themselves?).  For me, I realized that I can only be that intimate with somebody who is highly capable of empathy, and I was more likely to find that among other neurodivergents. Including Aspies.

 

 

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