Ladybugs: Autism, Empathy, and Processing Grief

by Leah Kelley

As a parent of a child with autism and as a teacher, I have a difficulty when others report that students with ASD lack empathy.I try to correct this faulty judgment when I have the opportunity to do so, by explaining that there really is not lack of empathy, nor any absence of the ability to feel this. There may however be a different way of processing or expressing the feeling, and also a challenge with understanding the perspective and therefore the experience of others. This is fundamentally different from the judgment that an individual lacks the capacity for empathy.

My son H has recently begun to process grief. It hit him hard at age 10 when his Behaviour Interventionist Roberta’s dog was sick and dying. It hit him all at once. He did not seem process it at two when his great-grandma died, or at 5 when our guinea pig died, or at 6 when his rabbit died, or at 8 when his other great-grandma died. He was somehow not visibly affected. He did not ask about it and he may have cried a few tears… but then it was basically never mentioned again. I realize, in retrospect, that there was likely much more going on that I did not at the time understand – but this post does not explore these complexities. Instead it tells a different story; the story of the grief and processing that was apparent much later.

H was devastated by the news that Roberta’s dog, Boomer, was dying and generously gave the dog one of his own stuffies to comfort him. When I suggested that he might like the stuffed bear back after Boomer had passed away, he said no – it would be for Roberta to keep… so that she would have the teddy to cuddle if she was lonely when she no longer had her dog.

I talked to a number of our school district counselors and all suggested that it was important for him to let his tears come so we spent many an evening with H in tears. We encouraged him to cry and we also started him seeing a counselor privately to assist him with processing his emotions.

Shortly after this we had to tell him that our neighbour, Mrs. L, was also dying. I didn’t really want to because he seemed so fragile and I knew he would be further devastated. We again welcomed his tears and his many questions. I noticed that he was looking to me to see if I was crying when he was, and he often asked if I was sad too. We reinforced that it was important to let his sadness come and cry his tears, or else his sadness may come out in other ways, such as anger.

In retrospect, one of the things we encouraged that proved to be most helpful was to be giving toward others and to work to comfort them and understand that they were grieving as well. His focus on the perspective of others helped him to move the process along for himself and to feel that he had some power. He couldn’t change the circumstances, but he was empowered by his ability to give to others.

Interestingly, we found that he seemed most anxious and concerned about how he would remember those he had lost. He seemed aware of his own challenges with episodic memory and we began to build and revisit the memories he had by telling stories of the dog and our neighbour and also the kindness he was showing in the process.

I wrote a story for him that recalled his experiences with our neighbour, Mrs. L, and his visit to her in the hospital, during which he read her the story Mr. Rabbit and the Lovely Present. I assisted him in writing his own lists based on the book The Tenth Best Thing About Barney, which he was able to share as well. He showed his appreciation for others and it gave his feeling of loss a place to be… surrounded by other feelings.

I also worked with him to associate memories with real items in a meaningful way for those he was losing. He subsequently began to create memory symbols for those he had lost long, long ago and to have tears for them as well. A ladybug came to represent our neighbour, and a goldfish represented his great-grandmother who passed away when he was 2. This might be best explained with an excerpt of the story I wrote for him:

That same day when H’s mom was working in the garden, she called him outside. She showed him a little ladybug that she had found… the first ladybug of spring.

She said, “H, I want you to hold this ladybug. Look at it. Isn’t it beautiful?”

H held out his hand and the little creature climbed up his fingers.

“Do you like it?” his mom asked.

“Yes” H responded.

“Can you keep it forever?”

“No…” H replied.

“That’s right…” said his mom. “You can hold it for a short time, and you can enjoy how beautiful it is. You can’t keep it forever… but you can remember this moment…

H looked at his mom and then looked again at the ladybug.

“The ladybug is like Mrs. L We can’t keep her forever, and now she has to fly away home… just like a ladybug. What we get to keep is how wonderful it was to know her while she was here and we can hold her memory in our hearts forever.”

H’s mom smiled at him… and he smiled back to her.

She said, “We are lucky… whenever we see a ladybug in the garden now we will think of Mrs. L. We have a connection to a sweet memory.”

We manually created and inserted the physical association with a concrete item to assist him with sorting and organizing his memories. The symbols that represented different people seemed to assist him with feeling that he had something to hang onto and a place to revisit and access his memories and to process his sadness. It gave him a sense of control.

Last week H’s other great-grandmother passed away. She was 103 years old and had been suffering from dementia for many years. Even though he had only met her as a baby, he was still upset when we told him of her passing. However, he seemed most upset that he didn’t really know her, so my husband and I began to tell him stories of his great-grandmother and we assisted H in writing them down.

This week H read these stories aloud at the memorial. This was an amazing gift and tribute because after many years of needing constant care and not being socially present in the lives of those attending, this little boy brought to the fore the memories of his great-grandma at her best. It was touching to see the shift in the mood as he brought her to life once again in their minds.

This little boy of mine has a very big heart, and a lot of strength. He has a huge capacity for empathy. He just needed a framework of support to assist him with processing in a slightly different way.

About the Author: Leah Kelley is a K–12 Special Needs Resource Teacher, a parent of a child with ASD, and an experienced primary teacher who blogs at Thirty Days of Autism. She completed her Master’s Degree in Education at Simon Fraser University, focusing on supporting educators in understanding the experience of students with autism.

Please Note: This article, originally written in 2009, was previously published as Ladybugs in the Spring 2011 edition of the Journal English Practice (the journal of the BC Teachers of English Language Arts), and has also been featured on the POPARD Website (Provincial Outreach Program for Autism and Related Disorders). It appears on the Autism and Empathy site by permission of the author.

Share

My Autistic Brothers Taught Me Empathy

by Tsara Shelton

About five years ago, I was throwing my hands in the air and hollering at my baby brother for ruining another of my calendars. My baby brother was 20 years old at the time, and I was tired of constantly having to replace the calendars in our home because he hated where the number five landed. Being the mother of four boys with busy schedules, I was trying to keep my life organized (if you know me, that’s quite funny!) and Rye’s obsession with where the five landed on calendars was making this quite difficult.

As I complained for the umpteenth time (probably more than that, I’m not exactly sure how many umpteen is), my brother apologized and told me that it hurt him to see the five landing on the calendar neither more to the left nor to the right, but rather in the middle of the surrounding numbers. It was then that I had an epiphany.

For the first time, and for a brief moment, I understood what it must be like to live in a world surrounded by people who understood one another’s problems, but never yours. I realized that for Rye, the physical pain he felt when looking at a calendar or seeing a rounded car was no less real than the anxiety I feel when looking at my bank statement and seeing a minus sign in front of my two hundred dollars. But for my pain, there are others who understand — friends and family members who get it and have been there. For my brother, there was no one who understood. No one he could talk to who would get it. For the first time, I felt true empathy for my brother — not pity or annoyance or a desire to help him change, but actual empathy for his pain.

I grew up the eldest of eight children, with four brothers on the autism spectrum. Of my four brothers, Rye and Dar are the most classically autistic. Rye is high functioning and Dar is very, very low functioning. For me to feel real empathy for the first time when my little brother was an adult — well, I felt rather horrible. And then I felt amazed. How is it that, despite my mother constantly telling me otherwise, I had never really noticed that I was asking for my brother to show empathy at every turn, while never offering him the same? How is it that, somehow, both Rye and Dar had learned to demonstrate understanding for others’ emotions, while I and others (except my mom) demonstrated mostly annoyance and suggestions for change when it came to theirs? How is it that my mom is always right??

When my mom adopted my brothers, I was less than impressed. Now I would be expected to help out with my new brothers; if I chose to go out with friends instead, what kind of person would I be? I had always been seen as the “nice” one. I went out anyway. I became the “nice” one at other people’s houses and pitched in a little at my own. I rolled my eyes when my mom insisted that the boys were able to feel the same feelings as I did, but that their challenges meant the feelings would show up in different places and would probably look different. What I saw was one brother rocking, stimming, growling, and hitting himself; another staring blankly in whatever direction he was facing, forever needing to pull up his socks; another threatening to beat up whoever was nearest, avoiding eye contact like the plague; and the little one repeating whatever you said while climbing the walls and putting his lips on heaters. I remember wondering why my mom would want these kids when even their own parents didn’t want them. Even the professionals in our world kept trying to tell my mom to stop getting her hopes up, that my brothers would certainly just end up in institutions and she should stop hoping otherwise. Why did my mom look at them and see adorable little people with challenges that they could overcome if they were only taught to believe in themselves?

Why was she the only one who would believe in them?

I admit to these thoughts because, on the day I finally understood what my mom had been saying all those years, it came to me: In order for my brothers to show empathy, they would have to know what empathy looked like. It would have to be modeled for them. My mom had always done that for them. But I never had. Not really. I have loved them, laughed with them, and snuggled with them. And as they all (other than Dar) became independent men, I have enjoyed conversations over coffee and given much advice on women. But I have rarely shown empathy for their very different but very real pain.

When my seven-year-old niece took Dar’s CD with various renditions of Through the Eyes of Love — which he listens to pretty constantly — and stapled it so we wouldn’t have to listen to it anymore, I laughed and promised Dar another one. Then, I chatted with my niece about how she felt hearing the same song over and over. It was her pain I empathized with, not Dar’s. And when Rye said he didn’t want to come with me to pick my kids up from school because it hurt him to see the school and all the kids doing well and being friends and having backpacks, I told him he was being silly and that I needed him to come with me because it was inconvenient to take him home. Rye empathized with my need for convenience. My autistic brother empathized with me when I had completely ignored his plea for empathy.

Dar has a leaky gut, serious bowel problems, an intention tremor, and other physical issues he is almost always dealing with. Rye feels sounds, sees things floating in the air around his eyes (poo flakes, he calls them), and wants friends but doesn’t know how to be one. My brothers are always dealing with some issue I can’t understand, in the same way that they can’t understand my issues. But they try. When I ask them to change, to be different, they try. When I tell them to care about me and my needs, they do. They are amazing people. I want to be more like them.

How can we say that autistic people have no empathy? Why do so many close their eyes to the constant empathy they show for us neurotypicals and our desire to live lives of convenience and normalcy?  Ever since the day of that epiphany, I have changed, just a little. I still ask my brother to overcome his challenges, just as I ask my children to overcome theirs, and myself to overcome mine.  But I also empathize with the huge extent of the challenges.

My autistic brothers taught me empathy. And they were unbelievably patient.

About the Author: Tsara Shelton is the mother of four wonderful boys. Her two youngest children exhibited symptoms of autism early in life. Having four brothers who were on the autism spectrum made her family uniquely qualified to recognize the symptoms and to create an at-home therapy approach. The boys never did receive an official diagnosis. She now spends most of her time either hanging out with her kids or making amends for her crazy teenage years by helping her mom, Lynette Louise, spread autism awareness.

My Autistic Brothers Taught Me Empathy was written expressly for Autism and Empathy.

Share