Friday, January 19, 2018

Diagnosed, again.

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?”

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

 (image is a screenshot of the THINK page in her device, with the words "autism" and "autistic" added on two dark blue buttons toward the bottom of the page. Maya chose the location, buttons, and images)

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.


Anonymous said...

I read some micro-snippets about Maya and, as someone familiar with autism I was not at all surprised at the dx. In fact, I would have been surprised had it turned out differently. That said, you and Maya are well prepared for thie continuation of her journey to a full and happy life. I wish you Godspeed in that journey.

Loreen Hernandez said...

I have two autistic son’s, one who cannot communicate well through speaking. He has just started a blog at and he has so benefited from communicating with other kids like himself.

Jan Wetherell said...

Are you familiar with the blog, "A Diary of a Mom" written by Jess Wilson? If not, I think you will find a ton of relevant info in her writing. She's also on Facebook.

Debra Blatt said...

Thank you again for sharing your story . As a Speech Pathologist too , I find your story so helpful in getting the parent perspective . Reading your blog has enriched my knowledge .

jennie phoenix said...

i've only recently started following you on facebook, and i'm not actually sure what made you show up in my feed. i have an 11yr old autistic son and i guessed that maya had not been diagnosed as autistic because that word didn't show up in your posts that i have read. why i started following you was that your love and honoring of your daughter comes through your writing so beautifully. the post about zootopia, where you said you set up a mirror so she ca do an activity that she asks to do, wants to do, in a way that feels safe to her, made my heart sing. we have lots of screen/media issues that i do my best to find balance with, not discouraging him, helping him identify what works for him... pg stands for parental guidance right??? :) anyway - your love and honouring of maya shine through this post as well. and your paragraph on language and "autistic" vs "has autism" was so wonderful. i'm not much for blogs, i find i dont have time, and need to be present here, not online, but i LOVE when i read sentiments that echo my own, and as is the case with your writing, often more eloquently. thank you.

Anonymous said...

Welcome Maya! I'm glad you're here!

I'm autistic too, I've been reading this blog for some years but I don't know if I've commented before.

Sonja said...

Confirms what I already know about Maya -- that she is a cool little girl who sees the world in her own unique way! And I totally agree with you on the "person with autism" thing.

Ruti Regan said...

I'm wondering about the implications of the "feel" page being full. How many pages are there? What happens when they all fill up?