The Autism Spectrum According to Autistic People

Autism neurodiversity
Autism neurodiversity

Lulu is a Rhinoceros: A Note for Parents, Teachers, and Direct Care Professionals

In the book LuLu is a Rhinerceros, Lulu is sure she a rhino. Her reflection shows a bulldog, the world reacts to her as a bulldog. She is sure that what she is missing is a horn, but when she meets Flom Flom the tickbird, we see that what she was actually missing, was the bird.

That begins Lulu and Flom Flom’s interdependent dance of the Rhinoceros and the Tickbird.

I want to tell you about how to be the bird. To do that, I need to tell you my story about being the rhinoceros.

I am a dancer. I am a dancer because that is what my body has always told me. As an autistic child I paced and flapped and twirled– a little. I hate being dizzy, but that’s what spotting is for.

I took dance classes. I could not tell my left from my right, I could not follow multi-step directions, I could not concentrate with all of the other bodies in the room.

I was removed from dance classes.

In high school, I tried again. My body felt long and lithe, but in the mirror I saw broad shoulders and short legs. I still couldn’t tell my left from my right, and it took me twice as long to remember the steps.

I hated being on stage, but my body continued to tell me that I was a dancer. Once in a while, someone would notice me completing everyday tasks, and say, “ You’re a dancer, huh?” I would get so excited that someone saw me!

But as an autistic, accuracy and truth are everything, so I would say, “I took dance, I loved it, and it taught me how to walk across the room without falling down.”

I was the Rhinoceros, looking for the bird.

In my 20s, I began working with adults and children with disabilities. For me, this was physically and mentally much like a dance. I was always in motion. I was required to think on my feet.

First do this step, then do that one, make sure you watch the other dancers, don’t run them over, feel the music, what is it telling you to do? In my new field, I was told that I was a natural. I knew the steps and felt the rhythm.

I found my bird.

Being Flom Flom

In this analogy, I had to become Flom Flom the bird. I had to see the rhinoceroses. I had to hear what the people I was serving were telling me about who they were.

I had to believe in their capabilities. I got to observe their greatness. Those were the two most important things I learned about the dance of interdependence being both the bird and the rhino.

Presume competence.

When Lulu shows up in the rhino enclosure, Flom Flom trusts that Lulu knows who she is and how to be a rhinoceros. Tickbirds have a job to do for the rhinos, but rhinos also have a job: to protect the tickbird, and provide it a safe place to have a nice snack.

In the disability community, we talk a lot about independence, and dependence, but we don’t talk about interdependence nearly enough. We write all kinds of goals for autistic kids and adults, planning all the ways that they will become more independent.

In creating those goals, we can unwittingly create more dependence. We take away the rhinoceros’s ability to be a rhinoceros, because she looks like a bulldog.

So how do we see the rhinoceros?

Slow down, be quiet. Watch and listen.

Every autistic person communicates who they are, through behavior, (all behavior): through words, whether they are scripts, echolalia, metaphors, or lyrics, written, spoken, or through AAC device. Or, they communicate through motion and activity. To be their tickbird, you need to know their language. To know their language, you need to listen.

When you know a person’s language, you begin to see their whole being. You start to know the same truths about them that they know about themselves. You see their strengths and their challenges on a deeper level.

To presume competence is to presume that a person is who they show you they are, and can be who they want to become, even if they have to run headlong through a park chasing their banana horn to communicate that point.

When we presume competence, and listen to all the communication, the dance of interdependence can begin.

A quick segway back to me…

Professionally, I learned how to listen. I learned when to help and when to stay in my lane. I learned to trust that a person I was working with had the skills and abilities to do something independently.

But rarely ever was I in a situation where a client had to do something for me. Interdependence was something I facilitated between my clients and the world. Going to a job site, frequenting a local cafe. I worked with artists with disabilities, so I often facilitated the interdependent relationship between artists and galleries, or artists and patrons.

These relationships are hugely important. As a direct care professional, it was my job to make sure that the world saw the people I was supporting as more than just that cute, sweet disabled person in need of their charity. The world needed to see them as the talented artist, the skilled and responsible employee, the hard working musician, the comedian, the poet, the caretaker, the manager, the adventurer.

The world also needed to see their disability, their AAC device, their wheel-chair, their need for sensory accommodations, and their need for one-to-one support staff. I facilitated that, too. The world needed to see both– that a person can be disabled and also be valuable in their community.

Interdependence at Home

Now in my 50’s, I have three autistic children, and I also have a formal autism diagnosis. As my children grow up, I have continued to be the bird, and I have had to learn about interdependence at home.

Practicing interdependence is far different than facilitating it. My kids are actually helping me, but I had to learn how to let them. I had to let them be rhinos.

One of my children is highly, highly organized. She keeps us on track, both with timing and also keeping things put away. She also keeps us informed about all of the comings and goings of the local wildlife, the plants and flowers that are blooming, and the neighborhood pets that have escaped their yards.

Another child has many food allergies. In response, she has learned how to cook and will cook for the whole family. She also is the one person who can effectively communicate with her younger sister when her sister is in shut down or meltdown.

My oldest child is out living in the world on their own. They are support staff to their younger sisters, as well as being my connection to the outside world. They challenge me to take risks and have adventures.

While I continue to do all of the tasks a parent does, I also have made space for them to help me run the show and have come to rely on their insights and gifts.

How do we break this down?

Listen and watch. Learn their language. Honor all communication.

Presume competence. Trust that the austistic person you’re supporting knows who they are and what they can achieve.

Allow them to do their job. I think every autistic comes with some sort of job hardwired into them: seeing patterns, organizing space, communicating with animals and/or people, artistic pursuits, seeking truth and justice, or ALL of those things.

Giving people space and time to follow these internal demands (being a rhinoceros), gives them confidence. Valuing those gifts, and incorporating them into a community, whether it is a family, a classroom, the neighborhood, or even social media, builds even more confidence and a sense of purpose and belonging.

For teachers and direct care professionals. Always keep in mind when you write goals, the steps in a goal are not for the person you are serving/teaching, they are for you. It is your job to facilitate and pave the way for that autistic person to become who they dream of being, not who you dream of them being.

Taking interdependence out in the world.

If autistic kids are heard at home, if their opinions and skills are valued and incorporated into the culture of the home, they are more likely to take those skills out into the world.

Kids who know their own skills and abilities can be great facilitators of fun in their social circles. I have seen some great collaborations between autistic children in the areas of collaborative art and storytelling and science. The autisic community at its best is a culture of interdependence, where autistics come together and organize for pleasure and also to get serious work done.

So the story of Lulu and Flom Flom is not only a story for children about a Rhinoceros who knows who she is and a bird who knows his value, it is a story for parents, teachers, and care providers. It is a story that teaches us adults how to honor people who are divergent, but also how to truly value who they are, who we are, and how we all need each other to keep the world turning.

Parents, Teachers, Direct care professionals, when you read this book, ask yourself:

When have I been Lulu the rhinoceros?

When have I been Flom Flom the tickbird?

You can purchase Lulu is a Rhinoceros for a discounted price during April here at Amazon.

You can also follow Lulu on Instagram, @LuluIsARhino

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