Tuesday, January 19, 2016

Guest post: Growing Sideways

Back in October, I published a post called "From Raffi to the Wiggles: The power of sideways growth." In it, I referred to a piece written by autistic writer, speaker, and advocate Lydia Wayman. By describing her own developmental trajectory as "growing sideways," Lydia not only provided a valuable lens through which I could view Bud's development, but she also gave me language that helped me explain it to others.

Unfortunately, the link in my post is no longer working, and the site that hosted Lydia's original essay is not currently operational. Lydia has graciously allowed me to post a revised and updated version of it here. (Thank you, Lydia!) It appears in its entirety below.

Growing Sideways

As a young adult on the autism spectrum, I’m a living paradox.  I may have a master’s degree and national recognition for my autism advocacy, but, given the chance, I would choose any Disney movie over boring, typical adult movies, and discussions of home decorating and husbands and fancy dinners hold my interest for… not long enough to even finish that sentence! While there may be other typical young adults out there like me, I become a little more unique in that I love Hello Kitty, stickers, coloring, and I refuse to carry a purse or wear make-up or high heels. I’m used to the shock and “I thought you were in high school!” when someone finds out I graduated over ten years ago.  Developmental delay is a common term for children, but I don’t see a lot out there about our timeline as adults. The difference is evident in skills and independence and many other ways, but one issue gets to me the most. Autistic people of all ages sometimes have interests that normally appeal to people much younger than our chronological age, and the idea of “age-appropriate” is almost enforced on us. I want to tell you that our interests may be different, but that’s not a bad thing!
Typical people follow a certain developmental trajectory.  At six months, babies like pacifiers and blankies.  At six years, kids like dolls and princesses.  At sixteen, teens are all about boys and cars, and at thirty-six, women are focused on husbands and babies.  So it shall be, they say. Says who, I ask?
Autistic people are not made to follow the same developmental trajectory as our typical peers.  It’s not that we follow a delayed version of it—we’re not sucking on binkies when we’re sixteen or having babies when we’re sixty-six.  Instead, our development follows an altogether different path. 
I remember middle school, when my friends became interested in boys and clothes and pop stars.  I’m very literal and straightforward, so I was lost in the cattiness and drama, and yet, I constantly remarked on the “immaturity” of my peers. I thought that maybe the issue was not their lack of growing-up but rather mine.  Now, I realize that they were growing up, yes, but I was growing sideways, onto an altogether different path—an autistic one.  The older I got, the further my path veered from the one everyone else seemed to be traveling.
By sixteen, I had simply had it with the ways of high school hallways and decided to graduate a year early and move on to college.  But, when I got there, I didn’t fit in socially and couldn’t manage my responsibilities.  My executive functioning skills had not caught up with my academic ability.  My social skills made for upsets with professors and other students, and that upset me because I didn’t understand what was wrong.  I tended to miss events and leave partway through classes with total sensory overload, and when that happens, my communication pretty much halts.
I did graduate at 21 with a major in Elementary Education and emphasis in Spanish.  Following graduation, I had services through the Adult Autism Waiver to help me with community inclusion, cooking, cleaning, and organization. I felt constantly held up to a measuring stick in which “normal” was at the top and I was always compared.  It’s not fair to hold the autistic 22-year-old up to the neurotypical measuring stick for the same age.  I have some gifts that far surpass what most can do at my chronological age, but for some services and professionals, it will always by my deficits that receive the focus.  I will never, ever measure up.
I would like to ask the state how they feel when I hold up their young-adult-selves to what I’ve experienced and accomplished in 26 years and ask them how they feel when they come up far short.  I would diagnose them as totally and utterly unexceptional.
There have been times when my interests “grew down.”  I like to stich, so for a while I liked to hand-stitch clothing for my dolls. I never did play with them typically, even as a child, but what if I had… at whatever age?  I have adult friends who play with their childhood toys as a way of working out situations and understanding them better. A few of us like to have a figurine stashed in a purse or pocket for something familiar on hand in case something unexpected happens. I don’t understand why some people want to take away a harmless means of experiencing and expanding our lives. It’s sad to think of autistic kids who are told over and over that they have to hide their happy because someone else might think it’s weird.
On a very snowy, blustery day, I went to see Frozen with my mom.  On the outside, I was an adult in a theater playing a children’s movie. Did I look like I was putting up with it? That’s what adults are supposed to do, right?  But on the inside, I almost wanted to leave the theater, not because I was bored but because some parts were playing out and putting words to things I knew so deeply but didn’t know how to say. They were making other movie-watchers feel for that character the way I felt all the time.
            It's funny how some distance,
            makes everything seem small.
            And the fears that once controlled me, can't get to me at all
            It's time to see what I can do,
            to test the limits and break through.
            No right, no wrong, no rules for me.
            I'm free!
I felt intense empathy (hint, hint) for the princess who felt like a monster who must isolate herself from her loved ones so as not to hurt them, but the song also articulated the amazing freedom and power I feel over the fact that these feelings are now buried in my past.  The power of the music and the stunning visual effects created a surge of emotion within me.  My mom could have said she didn’t want to sit through a kid movie, and I probably wouldn’t have seen it at all. But we both saw it, so I knew she followed the story and had the structure in her mind to understand my experience. We typed back and forth about it, which is always the best way for me to communicate, and I found words to help her understand what I had felt in the years before I typed, and she was able to give me advice and support about those things I’d been carrying most of my life. I thought she didn’t care when things felt awful… I hadn’t realized she didn’t even know.
It’s been two years now, and I still send an email to my mom with my writing when I realize she probably doesn’t know something…why I would put the cat on her when she was sick (they made me feel better, and she likes cats too), why I hate cash registers (don’t like beeping!), why I don’t like a certain department store (the lights are too bright and make the floor shiny and hard to walk on it)… sometimes it’s more serious, though. I was a verbal kid, but my mom has said that my writing has felt like getting to know a different person.
But what if I hadn’t seen Frozen?  What if it had been deemed inappropriate for my age?  What if my mom hadn’t come and watched it with me?  One of the most fundamental things in an autistic life is that people misjudge you all the time… your abilities, intentions, communication…
When you tell an autistic adult that an interest is too childlike, that they need to get back on the path where everyone else there age is walking… you take them off the path of their history and their future, and you take away the chance for that interest to help them process it all—to grow. Maybe I don’t grow up in the same way, but I do a lot of growing sideways, and that’s how I learn to cope and heal and find purpose.
Please allow us the freedom to pursue our own developmental trajectories.  The amazing ability and powerful insights that come from this freedom might surprise you after all.

Lydia Wayman is a young adult autistic writer, speaker, and advocate. She has a B.S. in Elementary Education and M.A. in English and nonfiction writing. Her blog, Autistic Speaks, and other writing supports parents and teachers by finding creative solutions to everyday challenges for autistic kids. In spite of the grim predictions from autism specialists about her adult life, this year, Lydia has earned her master's degree, spoken at national autism conferences, and had her story featured in the Wall Street Journal and on Good Morning America.


Thandi said...

Very interesting. Thank you for sharing.

Chris Miller said...

FYI tried to share this on FB but it says some weird "adult website" things as the flavor text - perhaps your account was hacked at some point and the embedded HTML tags are messed up?

Bean said...

I just need to say the name of this blog is the best thing ever.

Marianne said...

Thank you so much, Lydia Wayman, for this article! So many insights! So much "food for thought "!

Marianne said...

Thank you so much, Lydia Wayman, for this article! So many insights! So much "food for thought "!