Advocacy

Autistic Youth Program Launches!

Our first ever Autism Self-Advocacy Youth Program for pre-teens and younger teens began this past winter!

The students and facilitators learned so much from each other. We explored our senses, strengths, challenges, interests and more! The journey was full of twist and turns: some smooth and some bumpy.

We look forward to taking what worked really well and what could be improved and applying to our next session in the fall.

Come and join us as we look back on our journey!

Exploring the Senses

Along our voyage, we explored our senses. Together, we examined textures, movement, and body space awareness in addition to hearing, smelling, tasting, sight/vision, and touch. Students scanned the various parts of their senses using a worksheet and various items such as stuffed animals, fidget tools, and weighted objects.

We wanted to create a safe and no pressure environment. Some students choose to share their findings and what they learned about themselves with the group. Others remained quiet but listened intently to their peers. Our exploration of our senses helped to create bonds with each other.

What’s Your Superpower?

Next stop: we dove into some of our strengths and what we might find challenging. Many people find learning about their strengths and challenges hard let along young students on the verge of their teenage years.

We used pop culture references, superpowers and kryptonite (how many of you are thinking of Superman or the 3 Doors Down song in the late 90s?) to capture their attention and make it fun and exciting.

Students were able to either write down or draw their superpowers and kryptonite. Drawing allowed our student superheroes to not only better express themselves but to also helped them process information.

But I Don’t Want to Leave!

Discussing special interests (things that inspires them, what keeps them engaged for a very long amount of time, and/or what they could talk all day about) was the students favorite activity hands down. Students who usually did not speak during discussions opened up with such passion and enthusiasm. Discussions were lively and meaningful to both students and facilitators. Students stated they wished more time could be dedicated to this in future sessions.

All Aboard; Next Stop Home!

Our journey ended with an activity called, “the nest.” Just like birds working to make a nest for themselves and their babies, it is important to create a nest or sensory safe environment.

We discussed how each person’s nest is different and unique because of our different experiences and preferences. This nest should be a place for rest, safety, and comfort.

We asked the students, “what would you put in your nest?”

Students were excited for this activity. Some students used words and others drew pictures to show what they would put in their nest. The thought of creating a “mobile nest” or a nest on the go so that they can carry it with them was shared.

Next time we might have the students create a physical nest in real time!

Looking In the Rearview and Looking Ahead

Our team is currently reviewing the invaluable feedback from students, their families, and facilitators. We will be looking into activities to further increase engagement and bonding. We also want to utilize additional tools to reach students such as videos, pictures, physical activities, games, and role plays.

Many students in the program have individual learning plans (IEP’s). Next time we will find ways to better apply the student’s IEP to the lessons presented.

Our next trip will be planned in the fall of 2024. Click the following link for more information: Aspirations Ohio – Nisonger Center (osu.edu)

Stay tuned for our next journey!

Edited from the original work of Tema Krempley

Finding Your Voice

As someone who’s gone through most of their life not having a voice, I cannot possibly say loud enough how essential it is for young people on the neurodivergent spectrum to learn as soon as possible to BE ASSERTIVE.

I have noticed in many situations, the neurodiverse/disabled one is more or less expected to be the “good/sweet/nice” one (VERY particularly when said individual is female.) I can indeed vouch for what it like to like to get scolded and reprimanded for raising your voice, having an opinion, and/or saying what you feel. Meanwhile, [neurotypical] NT/abled peers are always allowed to act worse and get a free pass. Not only that, in many cases, you’re actually praised for not standing up for yourself!

Why is that? Does it go along with the generalization that disabled/ND individuals are perpetual children, with no true grasp on the larger world, who need to be sheltered because they apparently will never be able to conceptualize society?

I believe in many cases the “grooming” to always be the “nice, good, docile” one in all situations starts the very instant that a child (very particularly if it’s a girl) begins to show the slightest signs of a disability…even before an official diagnosis is made.

Realizing that you have a voice and *must* be able to use it in this world we live in (and that’s not always a “physical” voice” – it can be a hypothetical voice such as a communication device, letterboards, sign language, cards, etc.) can be overwhelming at first. And I’ll say something: if you spent most of your life being the good, sweet, meek one, there are people, tons of them actually, that are very much going to attempt to discourage you once you find your voice. They’re going to try everything in their power to bring back the “you” they were comfortable with, and that’s because they benefited from your passivity and meekness. People are going to guilt trip you, and make you feel as though you’re flawed. You’ll hear it all the time. Don’t let them get to you. They benefitted from the sweet, weak-willed you. They used you for their own gain. But, there *will* be a few that will respect and encourage you once you *do* start speaking up.

I’ll give an example: at my old camp in North Carolina, we were in the camp van, and someone sitting next to me was doing something that was bothering me. Instead of going, “um…hee…hee…” like I would do in such a situation (and remembering the one or two times, back at my old school when I, trembling meekly, attempted to stand up for myself, the “teacher” (not a licensed teacher) would say, “oh Giggles (note: my name was ‘Giggles’ because you know what they say…if you don’t laugh, you’ll cry) you can’t be mean like those guys. You’re so sweet and nice. They’re mean, so it’s okay for them to do those things to you),” I took a deep breath, and said, in my tiny, trembling, timid voice, “ummm…please stop…I don’t like that.”

I instantly braced myself for the explosion to happen. And it happened. But not in the way that I was expected. Instead of the van launching into “You can’t be mean to people like that! You’re too nice! That’s not like you,” one counselor, Addie, exploded into cheers, spun around and high-fived me, and whooped, “Kerry! You GO, tough girl!” And I could see faces all around the van, with huge eyes, their jaws on the floor, shocked, and in a state of disbelief. I heard a voice coming from another camper, “wow…Kerry NEVER tells them!”

And you know who was in the biggest state of shock in the van, out of all those people? Myself. Did I actually just stand up for myself…and not get into trouble? Moreover, was I actually *praised* for standing up for myself?

So, suffice it to say: I’ve realized that contrary to what I have been told most of my life, anger and passion are indeed good emotions to have to a moderate extent. It’s good to have an outlet to channel your anger, your rage, your passion, and use it to change the world. And a good part of this is learning self-advocacy, and advocacy for the disabled/neurodiverse communities in general.

Edited from original work of Kerry Perdy

Is Trick or Treating with Autism Tricky?

Crimson leaves on the ground, football games all around, and temperature cooling down. Autumn is here in Central Ohio. Another event that marks Autumn is trick or treating. While many kids might get excited at the thought of going out in costumes, going door to door, and getting candy, I, as one individual with autism, get sweaty palms, shallow breathing, and a jittery feeling in my stomach just thinking about it.

Before I go further, please note I am just one individual with autism. I am sharing my own experience with the understanding that people have varying experiences and beliefs with Halloween and Trick and Treating. I share my experience to offer another perspective, and in the hopes, people can become more aware of how others might experience and view this day and perhaps offer suggestions on ways to show support.

Although it’s been quite some time since I’ve been a child, I know I frequently became anxious with Trick or Treating. First, I had to decide on what I wanted to be and on a costume. Usually, I repeated the things I enjoyed like Power Rangers (like I said, it’s been a few years) and hockey. The challenging part was making decisions. In a different way, I still find making decisions challenging.

Next, I experience sensory challenges. Sometimes, the costume, such as the mask, was itchy. My elementary school held a parade for students. I marched around the school building with my classmates. So many people, teachers, staff, and family members were all around taking photos and talking. There was so much noise, and I found it visually overwhelming, and loud.

Then after school, I went trick or treating. However, it was challenging to go up to people’s homes, ringing the doorbell, and saying “Trick or Treat.” It didn’t matter if the person was a stranger or not. I find speaking up challenging, and if there were pets, that added to my anxiety. I was more comfortable if I went with others, and they rang the doorbell. Then I could just try to blend in with the group. I soon stopped Trick or Treating.

The anxiety of Trick or Treating has diminished as I have gotten older…slightly. In certain contexts, my anxiety still comes out. For example, at places of previous employment, there would be an opportunity for children and their loved ones to parade around the building. Staff such as myself would hand out candy. I found the environment overstimulating with the noise, costumes, talking, and talking with guests.

Fortunately, there are resources to help us understand Trick or Treating and how individuals with Autism would like to experience it. This experience can and certainly does vary. Also, there are resources to help individuals better support individuals with Autism, and a meaningful and respectful conversation should not be underestimated as well. All of this can take the “trickiness” out of Trick or Treating.

Additional resources are provided below:  

Autism-friendly Trick-or-Treat Tips – Southwest Ohio Parent Magazine (ohparent.com) 

Easterseals | Trick-or-Treating That’s Fun for Kids with Autism and Sensory Processing Disorders 

PFA Tips: Halloween (Make it a Better Experience) – Pathfinders for Autism