Today is Autism Awareness Day. For years now, I’ve blogged on this day, and shared some of my own stories around autism. One of the stories that I’ve shared is about Andrea Haefele and her daughter Bella. I’ve never had the pleasure of meeting Andrea and her family, but I feel as though I know them based on what she shares online. Every year, on World Autism Day, Andrea guest posts on a friend’s blog about her story. Her posts are always different and they always make me think. Sometimes they bring me to tears, as this one from a couple of years ago, did.

This year, Andrea did something different. She started her own blog. Parents, educators, administrators … you NEED to read this blog. This is real. Andrea shares her life, her thoughts, her fears, her struggles, and her successes with us through these posts, and she’s only added a few posts so far. 

• I am not a wife.
• I am not a mom.
• I do not have a child with special needs of my own.

But Andrea’s first post on labels still inspired me to blog. Here’s why.

I’ve often struggled with labels. In education, we use labels a lot. Normally to get additional support for students, a label is necessary.

• Kids can’t be identified without a label.
• Special class placements require a label.
• It’s easier to argue for modifications with the use of a label.
• Labels often help get E.A. (Educational Assistant) support … or at least more often than without labels.

I’ve had my own mixed experiences with labels. As I’ve blogged about before, when I was in Grade 2, I was identified with a non-verbal learning disability in the area of visual spatial skills. This “learning disabled” label could have changed a trajectory for me. The gap in my test results was wide enough that, 

• my academics could have suffered.
• I might not have made it into university.
• I might never have gotten the marks for the Faculty of Education.
• even if I made it to university, I might have struggled with the social interactions, organization, and time management required to live away from home and to pass my classes. 
• I might never have become a teacher. 

I find it hard to even think about this now, but it’s true. Thankfully a label didn’t stop me, and in fact, I actually needed this label to make it through university and the Faculty of Education.

My initial identification of “learning disabled,” lasted me a while, and before I went to high school, I was tested again. The same label held. But between Grade 2 and Grade 13 (yes, I went to high school when we still had OAC 🙂 ), I learned a lot of strategies to meet with success. I also benefitted from more choice in the high school program. I didn’t have to take subjects such as visual arts, where I struggled year after year, because of both fine motor difficulties as well as visual spatial needs. Geography also started to look differently in high school, and while I’m still unable to read a map, I could use my memorization skills to meet with success on tests. When I was in elementary school, most teachers would recognize that I had a learning disability because I struggled with the content, I was never organized (picture pages of paper flying out of binders in every which way and often going through the middle of the desk and right out onto the floor), and my marks suffered. I barely had a 65% average when I went from Grade 8 to Grade 9. In high school though, my strong reading, writing, and oral language skills, my ability to self-select more courses, and the move from paper onto a computer in most subject areas, had me going from a 65% average to a 92% average. Teachers still knew that I was “learning disabled” because I told them, but the label was less obvious. Most peers thought I was “lucky” to get extra time on tests, and I had to fight to continue to get this accommodation, as my marks were high. I quickly learned the mistaken belief — whether articulated or not — that learning disabled students are not smart kids. I was determined to change this thinking around my label.

Maybe, in some way, this is why I was so excited when I found out that I was one of the recipients of a Presidential Scholarship to Nipissing University. My label didn’t have to define me. But then, I found out that I needed this label. I hadn’t had an updated Psych Assessment in years, and without a more recent one, I couldn’t receive the support in university that I received in high school. Yes, I was successful, but this support played a big part in that. Due to my current marks though, I wasn’t a candidate for an updated Psych Assessment. What could I do? I tried to self-advocate. I wrote letters explaining why I needed this assessment, and why my marks were not necessarily indicative of the lack of a learning disability. In the end though, my parents paid for a private assessment, and that label went with me to university. This label continued to give me the supports that I needed, largely the use of a computer for tests and exams, and additional time for both. It also gave me the diagrams for some of my math exams, as I could not visualize what I needed to draw, but I could perform the calculations. But this label also gave me something else …

It gave me a connection to Student Services and to other students that needed support, just like me. I met some of my new friends through here. I also ended up connecting with some of their friends, and their roommates, which allowed me to further expand my social interactions at university. And through Student Services, I also connected with some Faculty Members that were there to support me, or offer advice, when I needed it. At a time with lots of new — from living away from home for the first time to meeting new friends and taking new courses — there was comfort in knowing that somebody was there if required. Without a label, this support wouldn’t have existed. 

Now, numerous years past university, I don’t think about this label much anymore. But would it “able” me, as Andrea wondered in her blog post? Maybe, at times, it would.

• Maybe somebody would give me those verbal instructions on how to find a room in a school instead of a copy of a map that I can’t read.
• Maybe I could have my own special parking spot in the winter months, since the ability to spatially figure out where the spot is without the use of lines, is something that I continually struggle to visualize.
• Maybe people would understand why I stand back during Ice Breakers in Staff Meetings and PA Days, since the very thought of these unstructured social interactions is overwhelming. 
• Maybe I would always have options to submit data, receive articles, and fill out forms online, as organizing paper continues to be a stressor for me. 
• Maybe people would know why I never want to share sketches that we need to complete during PD sessions, as the laughter which I know that they’ll produce, will bother me despite being unintentional. 

But I wonder though, do we see this label first? Maybe it’s all a matter of when this label is added. People know so much about me now — and have formed so many opinions of what I say and do — that maybe adding this label now won’t change things. What if the label, though, was the first thing that you knew about me? And is this what happens the most when it comes to autism? While we can learn a lot from labels, we cannot let any label be our only vision of an individual. We’re all more than our many labels. And on Autism Awareness Day — and every day after that — I hope that we can get to know the people behind these labels. For one of my favourite parts of Andrea’s post is the four bullet points near the top of it: through these points she tells us about her daughter, going much deeper than any label will ever do. I think it’s this that matters. What about you?

Aviva