When I Struggled to Use 'The A-Word' as a Special Educator and Mom

The first time I heard the word “autism” I was teaching Early Childhood Special Education at an elementary school in Kapolei, Hawaii. It was very early in my teaching career, and I moved from teaching students with significant emotional and behavioral disabilities in a self-contained setting at a middle school to teaching 3- and 4-year-olds with various disabilities in an inclusive setting with a Head Start class. Some of you may be thinking, why in the world would anyone move from Hawaii back to Wisconsin? That is an excellent question that I have asked myself regularly from November through February each year since, but my family is in the Midwest. Family is more important than constant sunshine and living a few blocks from Waikiki Beach — at least that is what I regularly tell myself.

As I reviewed the records of the students I would serve that year, I read about a young girl who was diagnosed with autism. This was 1996, so it was long before autism was as well-known as it is now. It was also my first encounter with a learner who had the diagnosis. On our first day of school, her mom explained that she had echolalia (a new term to me at the time) and was a runner (another new term to me at the time). I quickly learned that echolalia meant she repeated everything that was said all day long — which was a lot in a room full of young children. I also quickly learned that being a runner meant she takes off without warning and runs to anywhere and everywhere in the school and even out into the street. I had done all of my student teaching and my first couple of years of teaching working with older children who had a lot of mental health issues and behavior challenges, so this experience was certainly going to be a new challenge.

I went home the first day beyond exhausted and started doing my research. This was at the time of dial-up internet, so getting access to information was not as easy and quick as it is now. I read lots of books and went to conferences. I used everything I had learned about shaping and helping learners control and change their own behavior to apply whatever strategies I could. I did not realize what I was doing at the time as there was not as much research available then about the science of the brain, but since then I have learned about brain mapping and how you can create new neural pathways. That makes sense with where we found challenges and successes that year.

After the first few weeks of school, I realized one of us was not going to make it through the school year if something did not change, and the 4-year-old was winning. I started working closely with her parents, her doctor, other staff, and anyone else I could ask about strategies to help. We made visuals for everything and eventually trained her to follow cues to tell us what she needed instead of running away. The key to success was being more consistent in my practice than I had ever been before and making sure as a team we all used the same language and the same cues whenever we worked with her.

We ended up having a great year. She learned how to respond to real questions instead of repeating others, she told her mom she loved her for the first time. That was a great day! She was able to play with others at recess with laughter, and she taught me a ton. I learned new ways to problem solve and how to see behavior as communication in a different way. I always understood that behavior was communication, but I was used to a lot of angry, acting out behavior. This was new stuff for me and helped me to see learners from an asset-based lens.

This little girl, who happened to have autism, had so many incredible gifts to offer the world; she just needed us to look for them in really unexpected ways. Although I went back to the mainland at the end of that year and back to working with older students, I have never forgotten all that she taught me that year and still talk about it almost 25 years later in sessions about how to work with children with unexpected behaviors in the classroom.

Since then, I have worked with many students who are on the autism spectrum and their families. I know even more now about the communication, academic and behavioral needs of these learners and have continued to learn so that I can help our teachers and leaders have the best skills to include them in every setting. I’ve learned about the entire spectrum and how varying the needs are across it. If you know one learner with autism, you know one learner with autism and what works for one rarely works for all.

When I served as the Coordinator of Special Education for our school district, we started one of the first autism-specific programs for high school students in our area. We worked with grants and research organizations to get additional training for all teachers in understanding how to connect to and include students on the spectrum in meaningful ways. I have been able to support amazing teams of teachers and speech pathologists to develop a high school course based on the work of Michelle Garcia Winner in Social Thinking.

Since then, our speech pathologists have expanded the work to running groups at most of our schools for students with disabilities. Over the last two years, they have also trained many regular education teachers and school counselors to work with all learners on lessons in Social Thinking combined with the Zones of Regulation strategies from a very early age. Our goal is always that all of our learners can see their own place in a group, learn how to identify their needs, and learn strategies to feel empowered. When they understand their own social interactions and emotions, they are more likely to find a sense of belonging within a group and therefore want to contribute and create.

With all that I know now, you might be surprised to find out that it took me almost three years to use the word autism in reference to our son, Nick. Nick has autism, ADHD and dyslexia, which has turned out to be an opportunity to learn everything that is important in the world. Although professionally I knew a lot when we realized he was on the spectrum, you can forget everything you know as a mom. It took me a long time to accept his diagnosis and talk about it with others. In a class for pre-service teachers at a local university, one of my students recently shared that one of her learners has “no support from home. His mom didn’t even come to his Individualized Education Plan (IEP) meeting.” I have been really open about Nick, his diagnosis, and why the school getting it right is so essential in our class. My response that it took me three years to say the “A” word when it came to my son shocked her, and it made me realized I should talk about that more.

I have been really open about sharing many of our success stories and what we have learned in the last several years both at work and with my family and friends. I don’t always talk about the time when we lived in a world of grief, afraid of what he might not become or denial that others just didn’t know him well enough. If that is how I felt with years and years of professional experience, how does someone feel who is trying to navigate an impossible system of medical care with no background or connections to resources to find the right support within the system? If I find IEP meetings ridiculously intimidating when I ran them for many years, how does it feel to be a parent without that background knowledge in a room full of experts talking about what is wrong with their child and our plan to help?

I have the support of family and friends who stick by me even when I am not in a place to receive that help. I have access to resources through my professional networks and the privilege of being able to get him to multiple therapies and services each week with the support of my husband and extended family that not everyone has. We recognize that and are thankful for it every day. We certainly don’t have it all figured out by any means, but we have found some alternative therapies that are game-changers and were able to move him to a school we thought was a better fit for him where he is thriving.

When I think about why I was so afraid of the “A” word, it comes down to not wanting him to be seen as his disability before someone gets to know him as a person. I had accepted that he has disabilities for years, but I was really fearful of the “A” word because many people want you to know everything they know about autism before they ask one question about Nick as a person. He has this amazing, gentle spirit and sees the world in a really beautiful way. He just doesn’t show that side of himself to many people, which also took me a long time to realize as I have always been one of “his people” and made some assumptions that others were having a similar relationship with him to the one I have.

My fear that his relationships would be defined by his label impacted me and kept me from teaching him to own who he is and express how he thinks differently about the world, why, and what he needs from others for a long time. I feared that others who have sympathy for him instead of empathy might therefore not hold him to the highest standard, or simply ignore him if they didn’t understand the disability and that he is more than his label. He has made me a better educator and leader, as I am much quicker to try to see everyone and every situation from an empathetic lens.

I don’t always need to be able to understand why someone feels a particular way to recognize that those feelings are real and take them into consideration with a response or some support. In the role I get to serve in now, our experience in supporting him helps me to know why every classroom needs to be a place where every learner feels embraced as part of the community, appreciated for the gifts they bring, and given opportunities to create in ways that connect to who they are even if who they are is different than what we would typically expect.

At the end of the day, we all have to remember that we are each doing the best we can. We each have different levels of education and life experience that contribute to who we are and how we respond to the next challenge life throws at us. People expected my acceptance to be different based on my experience, but it was not. I love my children as much as my parents loved me and as much as the parents we serve love their children. Those without the skills to navigate the system or the background to know what to do to support their child who learns differently in school love them just as much and really do want the best for them. They may just have a harder time showing it and being vulnerable enough to share their story with us. Given how long it took me to share mine, I get it.