Growing Sideways

As a young adult with ASD, I’m a living paradox.  I may have a book contract, burgeoning speaking career, and (almost!) a Master’s degree, but, given the chance, I would choose any Disney movie over boring, typical adult movies.  While there may be the not-so-odd typical young adult 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 look and sound about sixteen, which is ten years younger than my actual age.  I don’t see much literature on the issue of autistic individuals who have younger interests than their chronological age, and I want to tell you that it’s not a bad thing:

Typical people follow a certain developmental trajectory.  At six months, we like pacifiers and blankies.  At six years, we like dolls and princesses.  At sixteen, it’s boys and cars, and forty-six, it’s husbands and babies.  So it shall be!

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, such that we’re sucking on binkies when we’re sixteen having babies when we’re sixty-six.  Instead, our development follows an altogether different path.

I developed fairly typically for my early and middle childhood.  I was a very good (although bored) student with strong verbal ability.  This has not changed.  As I got into my early teens, my friends became interested in boys and clothes and pop stars.  I was utterly lost in this new world of cattiness and drama, and yet, I constantly remarked on the “immaturity” of my peers.  When I grew older, 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.  I had always been autistic, but my development didn’t hit a fork in the road until that point.

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, it quickly became apparent how I didn’t fit in socially and couldn’t attend to the many responsibilities of my newfound freedom.  My executive functioning skills had not (have not!) caught up with my academic ability.  So, at that point, I was different both socially and in terms of overall metacognitive (“thinking about thinking”) ability.

I did graduate at 21, in just 3 ½ semesters, with a major in Elementary Education and emphasis in Spanish.  Following graduation, I received services through the Adult Autism Waiver where I was helped in community inclusion, cooking, cleaning, and organization.  I grew very frustrated with the services, as 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 individual of 22 years 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, in the medical model, 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 have 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.

By that point in my life, my interests “grew down.”  I loved my dolls, although I didn’t play with them as a child would have.  Instead, I hand-stitched clothing for them.  But, what if I had played?  I have adult friends who still very much enjoy setting up pretend situations for their childhood toys.  Through these experiences, they are teaching themselves new ways of understanding their world.  Just as my way of processing is through my fingertips on a keyboard, other autistic adults process through make believe scenarios, and I question why we seek to take away this very valid means of experiencing and expanding their lives.

For about eighteen months, I went through a period where I left my childlike interests behind and focused on other things, but, emotionally, that was the darkest period of my life.  Not only was I going through intense physical and emotional pain, but, after my experiences with the Waiver services, I felt like I couldn’t turn to my most beloved pink Hello Kitty motifs and Disney Princess movies for a source of joy.  Sometimes, I would engage in these joys for brief moments, but I hid those times and felt guilty about them.  This is a feeling I never want for my little brothers and sisters in the autism world.

I’m thrilled to have seen the movie Frozen with my mom.  On the outside, I was an adult in a theater playing a children’s movie.  On the inside, I sat in my seat, contorting my body to keep from bursting into tears as the song Let It Go played.

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 character who sang a deeply emotional song about feeling 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 Idina Menzel’s voice (the original Elphaba from Broadway’s Wicked) and the stunning visual effects created the surge of emotion within me.

My mom could have kept me from seeing the movie, since it’s “for kids,” but the experience, which I wrote about, sparked conversations between us, leading to revelations for me and understanding for her.  One never knows just how an autistic adult is using supposedly childlike interests…

… to cope, to grow, to heal.

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 is a young adult with autism whose world revolves around her faith (with cats and the color pink following not far behind!)  She likes to spend her time doing anything that can be created, from drawing, to painting, scrapbooking, needlepoint and of course, writing.  She tends to live life hard and off the beaten path, but she likes it that way.  She was diagnosed at 21.  She received services through her state’s Adult Autism Waiver for 18 months before her health got very complicated.  Though she lives in a nursing home, she sees no reason why she can’t change the world.