Author: shepler.29

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

5 Relationship Thoughts for Everyone

Valentine’s Day. A day dedicated to love and appreciation. Some celebrate the day with their significant other, friends, families, pets, themselves, or they don’t celebrate it.   

Regardless, Valentine’s Day is about relationships, and relationships are challenging to navigate whether one is neurodivergent or not. They are confusing, complicated, and hard. Yet, they can also be fulfilling, inspiring, and meaningful. I happen to be an individual with autism, and I believe there is an added complexity regarding understanding, creating, and maintaining relationships for most people with Autism.  

Consider dating. Does one give out their phone number after a great first date? The answer might be clear for some. However, for others, me included, the answer is not clear. My husband reminds me of this jokingly. “You didn’t give me your phone number after our first date. I wasn’t sure if you wanted to see me again.” To which I reply, “I didn’t know that was a standard thing. Well, I think we can conclude now, I wanted to see you again.”  

Texting and social media add additional challenges to relationships.  I am not even going to pretend I know how to navigate relationships on those platforms.  

However, based on my life experiences, I will share considerations a young person or anybody for that matter might want to think about when they think about relationships (whether with family, friends, significant other, or self). Although these considerations are not solely about romantic relationships, these other relationships are important, and lessons learned can be applied to romantic relationships as well.   

Please note though, I am just suggesting giving these items a thought. I am not a professional.  

What qualities do you look for in a person you want to be friends with or date? I encourage the reader to pause and jot down a few before reading further.  

Okay, have a few written down? Great! Couldn’t think of any? I understand. It’s hard to think of something abstract.  

I provided five examples below (For these examples, I use the term friend): 

  1. Communication.
    • How does your friend communicate with you? Do they respect your desire to be quiet at times? Do they have patience if you are struggling to get your words out? Or do they tease you if you stutter and become impatient? Do they understand that you might talk a long time about something you care deeply about? 
  2. Respect.  
    • Let’s say you are sensitive to certain fabrics, so you wear cotton T-shirts and jeans every day to school. Does your friend make fun of you for this? Do they say, “Your clothes are lame. Did you get them from a garbage dump?” Or do they support you. Do they say, “I was at this store the other day, and I saw this cotton shirt, and I thought of you. Let me show you it. I think you would like it.” 
    •  If you are experiencing a meltdown and can’t meet up with them. Do they show concern for your well-being, or do they tease you? 
  3. Trust.
    • You’re in high school, and you get rides to school from your friend. They promise to take you to school every Friday. Do they follow through with what they promised? Or do they break their promises and provide no explanation. Do they say, “yeah, sorry, I didn’t feel like it today.” Or do they say, “I am so sorry. My little brother had a dentist appointment, and my mom got called into work last minute, so she asked me to take him. I totally forgot to text you with all the excitement. Let me make it up to you this weekend. I will take you out to lunch.” This person has been picking you up regularly and has texted you in the past when they couldn’t make it. You are frustrated but you feel this was genuinely an accident.  
  4. Responsibility.  
    • You are in 7th grade, and you and your friend are working on a project together. Does your friend do their part of the project, or do they put it all on you? 
    • If you share your prized comic book, will your friend take care of it, or will you find it with food stains all over it? Similarly, do they take responsibility? If they did get stains on the book, do they accept what they did or do they blame something or someone else?
  5. Commonalities. 
    • Do you have things in common with this person? 
    • Do you both like sports, music, theater, comics or reading?  
    • How do you both feel about last-minute plans? Do you both like surprises? This can help when it comes to planning to watch a movie together or going out to eat. If one person likes to decide on something suddenly and the other doesn’t that could create conflicts. If there is a conflict, are you both open to a compromise? 
    • Humor. Do you and your friend share a sense of humor? Is humor important to you?  

 These are just some examples of how communication, trust, respect, responsibility, and sharing something in common can factor into all types of relationships. So much more could be written, but there is not enough time. So, for today I will conclude with the following: 

Relationships are hard, and relationships in the teen years are especially hard. One might want others to think of them as “cool” or perhaps they really want to date. There is peer pressure and bullying (which sadly doesn’t end in adulthood). However, there can also be friendships that last a lifetime or a significant other who you really bond with and are happy to share your life.  

This isn’t a how to guide to have successful relationships. People are complex. Yet, it is my hope that the people you are able to surround yourself with (sometimes you don’t have a choice) are people who enrich your life, who respect you, and treat you well. Most importantly, I hope you respect yourself and treat yourself well. It is important to be your own Valentine too.  

Happy Valentine’s Day! 

Provided below are additional resources regarding Autism and relationships: 

Autism and Relationships: Benefits and Challenges (psychcentral.com) 

What My Autism Has Taught Me About Dating and Relationships – Autism Spectrum News 

Understanding Neurodiverse Relationships – AANE 

Autism and Expressing Love: Relationships on the Spectrum – Autism Parenting Magazine 

Autism: At Rest and In Motion

“An object at rest remains at rest, and an object in motion remains in motion at constant speed and in a straight line unless acted on by an unbalanced force,” (NASA Glenn Research Center, 2023).  

Sir Issac Newton laws of motion are used to help people understand physics. However, can features of this law also help us to understand the relationship between structure/routine and individuals with Autism, (NASA Glenn Research Center, 2023)? 

When I was younger, school provided structure and a set plan for the day. Certain things happened at certain times. For example, I woke up at a certain time, had lunch, had specific classes at certain times, and was dismissed at a certain time. Once the school day was over, I had a snack, did my homework, and on certain days, I had hockey practice. I also watched tv, showered, and went to bed: around roughly the same time. I didn’t know it at the time, but I was in a state of flow or motion. On some weekends, evenings, and breaks from school, I had more free time, and I was in a relative state of rest.  

I felt comfortable when I had routine. I knew what to expect, and I could plan things out. I didn’t feel anxious. However, life being life, I experienced outside and unbalanced forces acting upon me. 

Just what were these outside forces? These outside forces came in various shapes and sizes. For example, moving to a new place, moving to the next grade, starting new quarters in college, winter, spring, and summer vacation, transitioning to new jobs, someone sitting at my spot at the lunch table, a restaurant or grocery store not having something I wanted, the holidays, changes in weather, someone being late, and changes in relationships.   

When these outside forces occurred, I felt anxious, sad, anger and confused. Things didn’t make sense. I also looked to others, such as my parents, for guidance and instruction.   

As an adult today, I still try to establish routine and create structure. However, I am better able to respond to these outside forces and changes to my routine because of the skills and tools I learned.  

As each individual with autism is different, one thing may work for one person and something else for another. I’d like to share some tools and resources that have helped me in the hopes that it might be able to help others too.  

Some strategies include: 

  1. Coping ahead. For example, if I need to go to a new place, I try to learn as much about the area ahead of time.  (I know this is not always possible).  
  2. Learning and understanding emotions. Ex: I learned about how my body reacts to emotions. For example, how does my body react when I am angry or sad? This has allowed me to better understand my emotions. Then, I know I need to change what I am doing to help my mood.  These behaviors can include exercise, a hobby, or rest. When I was younger, having a relative set routine helped me even if it varied from time to time. Talking about the changes (new school year or holiday plans) ahead with family also helped. 
  3. Deep breathing and time. Ex: When something unexpected happens, I sometimes feel upset. I close my eyes, take a deep breath, and give myself a little time to process what is happening. I notice that sometimes I feel better, and I can then address the sudden change better. 

Life is unbalanced and acts upon us all the time. This disrupts our flow: our state of rest or action. However, hopefully with education for individuals with autism, family members, and community members we can develop awareness and knowledge on how we can all manage these unbalanced forces better.  

Provided below are additional tools one may find helpful.  

Transition Resources for Autism – Toolkits and Guides | IACC (hhs.gov) 

Transition Time: Helping Individuals on the Autism Spectrum Move Successfully from One Activity to Another: Articles: Indiana Resource Center for Autism: Indiana University Bloomington 

Smoother Transitions for Children on the Autism Spectrum | Psychology Today 

Sources: 

Newton’s Laws of Motion | Glenn Research Center | NASA 

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