Last week we learned the results of a recent evaluation:
Maya is autistic.
In thinking about how to write this post, I wondered whether readers (who only get snippets of her story) would be surprised to learn this---I thought that possibly, yes. (It didn’t really come as a surprise to us.) I thought that, if I were sitting to tell you in person, you might ask, “What made you guys go in for the evaluation?”
In thinking about how to write this post, I wondered whether readers (who only get snippets of her story) would be surprised to learn this---I thought that possibly, yes. (It didn’t really come as a surprise to us.) I thought that, if I were sitting to tell you in person, you might ask, “What made you guys go in for the evaluation?”
There were 4 (ish) reasons.
Reason #1: (flashback with me) It’s June (2017) and I’ve just
gone into Maya’s room after she’s woken up. As usual, she is using her
communication device (“Mini”) as a light, shining it onto one of the various
reading materials (magazines, brochures, business cards, papers) that she keeps
in her bed. I sit next to her and she shows me what she’s reading---it’s an
article in a local “special needs” parent magazine, introducing Julia, the new
autistic puppet on Sesame Street. She
pointed to the article and said, “I might have this.”
(!)
I paused, waiting for the parenting-coach-fairy who is
surely supposed to appear at such a loaded, important-feeling moment and
whisper just the right thing for me to say, but no one appeared. So I think I
said something that wasn’t dismissive but also wasn’t exactly jumping into a
big conversation---like, “Oh really? Why is that?” or maybe “Oh, that’s
interesting. Maybe! Did you read something good about it?” and then, after she
answered, changed the subject and announced that it was time to go get Will or
something.
Reason #2: A few weeks before this conversation, we had
received Maya’s genetic diagnosis: MED13L syndrome. While waiting for her final
results, I had read about the syndrome, and the MED13L gene, and learned that
its association with autism is being studied. Not all kids with MED13L syndrome
have autism, but many do. I had begun to wonder if it was worth exploring
whether an autism diagnosis would be a fit for Maya. Her comments nudged me to
look into the diagnostic process.
Reason #3: Over the past few years, as Maya’s communication
and motoric skills have increased, we’ve been able to learn more and more about
her---things that she loves (LOVES!), things that she hates, experiences that
she enjoys and others that are “too much”, etc.
(For example, while we always knew
that she enjoyed papers and magazines, it wasn’t until she could independently
run across a library, move around a pile of materials, get to the rack of
fliers/schedules, select a stockpile of them, and triumphantly return to sit
and read them that we really understood how deep her love for them really is.)
As the way that she thinks and interacts with the world has also become more
transparent, easier for us to see, our understanding of her as an individual
has deepened. At the same time, our understanding of “typically developing”
children had deepened---Will is now in elementary school, and the way that he
thinks and interacts with the world provided us with an interesting contrast to
consider.
Reason #4: Over the summer I was fortunate to work in
a high school that had a large population of autistic students (I’m
currently completing a degree in speech-language pathology). It was a fantastic experience, and I was able
to develop a more complete understanding of the diversity that exists on the
autism spectrum. It wasn’t difficult to imagine Maya as a member of that
community (well, other than the fact that it meant imagining her in high school---eep!).
When we initially met with the doctor to
talk about scheduling an evaluation, she asked, “Why are you seeking diagnostic
clarification now? Are you looking to change schools? To seek insurance
approval for something new? What brings you in at this time?” I considered the question. Maybe a diagnosis
would change our path at some point in the future, I said, but right now we were
really here for . . . culture, kind of. In the past
I’ve valued (and prioritized) Maya’s ability to meet and interact with other AAC
users, because it’s important to connect with others in your community---people
who share a unique perspective and set of experiences. To that end, if Maya is
autistic, I want to be sure to help her learn about that part of her identity
and support her ability to find and connect with peers in that community as
well.
This is a diagnosis that doesn’t change anything, because
Maya still is who Maya always was. But it’s also a diagnosis that changes some
important things: it may provide Maya with a deeper understanding of herself. It
supplies a framework for family discussions about neurodiversity and more
meaningful dialogue about why some things are more challenging for Maya than
they are for Will, or for us (her parents).
We’ve introduced the concept to her, and now
we’ll follow her lead. The other day she wanted to add the words “autism” and
“autistic” to Mini, so I sat with her and opened up the editing screen.
Me: Ok, we’ll add autism
and autistic. Where do you think they
should go?
(kind of holding my breath, because the screen she chooses will give me my first glimpse into how she's internalizing the concept of autism)
Maya: (looks at home screen on Mini)---(selects FEEL)
Me: That’s a great choice! Oh look---this screen is full.
(taps to return to home screen) Where else might be a good fit?
Maya: (considers) (selects THINK)
Me: Perfect J
A few notes:
1. We’re choosing to use identity-first language (e.g. She
is an autistic girl) as opposed to person-first language (e.g., She is a girl
with autism). This is a decision based on years of reading pieces by (and interacting with) disabled self-advocates and autistic self-advocates, and also general gut feeling.
This language choice validates autism as a central part of the way Maya thinks
and interacts with the world---an important part of her identity—rather than
viewing it as a disorder, something that needs to be fixed or cured. Thank you
for respecting our choice.
2. You may notice that I said “There were 4 (ish) reasons.”
This is because there are 4 reasons that we’re going to talk about here, and
some other things that aren’t open for internet conversation.
3. The online world of autism is a little intimidating. Anything
that I write is coming from a place of genuine good intentions, but I may end
up getting things wrong. I’m listening and learning as I go.