RICHMOND, Maine — Kathleen Leopold is first and foremost a mother of four children. Three of them have autism spectrum disorders. To raise awareness and document the challenges — and joys — of her daily life, she writes a blog at autismherd.blogspot.com and has spent years advocating for individuals and the media to see that autism isn’t a be all, end all diagnosis.
“Our lives are not tragedies, my kids are not suffering,” she said. “We have much more joy than hard times, much more laughter.”
Leopold also had a short story published in the recent “Chicken Soup for the Soul” book “The Multitasking Mom’s Survival Guide.” First written as a blog post, “Framed” tells the story of her children’s insistence on purchasing school photos, even though in her opinion, “they look strange.”
April is Autism Awareness Month, a fitting time to talk to Leopold about her life as a mom, and to share what people should know about autism spectrum disorder. Her answers have been edited for style and space.
Q: Tell me a little bit about yourself.
Well, if you had told me 20 years ago that I would be living in rural Maine with my husband, four kids, two chickens, three dogs and a bunch of cats, I would have laughed at you. I guess you could say that my life is a mash up of Betty Crocker meets Godzilla. I’m just a regular person like anyone else, doing the best that I can to help to raise responsible, caring adults.
Q: Tell me about your family.
We are very loud and messy. We dance and we sing, usually at the same time. My oldest, Sam wants to design and illustrate comics and graphic novels. Oscar is my YouTube aficionado. There is nothing on the Internet that he cannot find, which has led to some interesting conversations and why the computer is in a public place at home. Lily is our lover of animals and an excellent writer. Zoe writes a series of very funny stories based on a boy named “Billy” and loves anything and everything to do with art. My husband, Omar, is my rock, the anchor to my very turbulent boat. Me? I revel in it all as I try and keep up with everyone.
Q: Why did you start your blog and what do you write about?
It was actually “The Oprah Winfrey Show” that started me blogging more than five years ago. She did a program about autism, and I was utterly horrified. All that it did was focus on the hardships of the parents. There was barely any joy, barely anything but video of tired frustrated parents and piles of dirty laundry. I sat there gobsmacked. This wasn’t my life. Now, I’m not going to say that it is easy. I wanted to yell at the television, but since yelling at televisions doesn’t really accomplish anything, I started writing.
Q: What is autism to you?
Autism to me is an explanation. It allows me to understand why one of my kids does something and it allows me to try and help them. When we were new to diagnosis, 12 or so years ago, I did not have access to a computer. So, we didn’t have websites or blogs or anything that may have clued us in as to what was going on with our boys. When the diagnosis came, we were relieved. Finally, there was a name for the behaviors of my sons. Autism is part of what makes my children who they are.
Q: What do you want people to know about autism?
In this month of “awareness” it is funny how much people don’t know. For instance, if you’ve met one autistic person, you have met one autistic person. It is a developmental spectrum disorder that affects people in many different ways. Autistic people are not empty shells. Also, autistic kids do indeed grow into autistic adults. Services, supports and accommodations are difficult enough to find for children, for adults, it is even harder.
Q: What do you want other parents or guardians who have children on the autism spectrum to know?
If you are new to diagnosis, early intervention is everything. Remember that you are not alone and do not be afraid to reach out. Do not isolate yourself. Remember, your kids are going to keep developing and growing at their own pace and in their own time. Some really good resources include The Autism Society, Autistic Self Advocacy Network, Wrongplanet.net, The Autism Channel and the Autism Blogs Directory.
Q: What can we do as a community to help families?
Acknowledgement, acceptance and inclusion. Autism isn’t one month a year, it is every day. If you know someone with autism, or a family who has children with autism, understand that they might do things differently. Do not judge. When you talk about autism and awareness always remember that you are talking about people. No one wants to be referred to as a tragedy.
Q: And just because it’s fun to know, if money weren’t an object, what would you be doing with your life?
That’s easy. We would buy a tour bus, hire a tutor and explore the world with the kids, the chickens, dogs and cats. I of course would have unlimited coffee, chocolate and books. While we were traveling, I would also hire Mike Holmes to finish our house and maybe ask him to take down the Halloween decorations.