Encouragement Speaker Derrick Hayes gives an AUTISM Interview by asking six questions through each letter in the word AUTISM to give readers an insightful perspective from parents, experts, entrepreneurs, and other leaders in the field.
Who is Marcelle Ciampi?
Marcelle Ciampi, MEd (pen name Samantha Craft), is an autistic author and worldwide advocate; she is best known for her writings found in the book Everyday Aspergers. Her resources have enabled thousands of adults to receive an ASD diagnosis.
Marcelle is a former school teacher who has been featured in various literature, including the Stanford University project: ND GiFTS, ICare4Autism, and The Art of Autism. Considered an expert in the field of neurodiversity in the workplace, Marcelle has been quoted in multiple books and research studies. She serves as the Associate Director of DEI at Ultranauts Inc., an engineering firm with an autism-hiring initiative. Her knowledge is shared through consultancy work at quality enterprises such as Uptimize.
A contributing author of Spectrum Women: Walking to the Beat of Autism, Marcelle speaks globally on the topic of autism. She also serves as the founder of Spectrum Suite LLC, Co-executive of LifeGuides for Autistics, and a contributor and advisor to autism organizations and conferences worldwide.
Marcelle is diagnosed with autism with gifted-intellect and is also dyslexic and dyspraxic. She resides in the Pacific Northwest, USA, with her sons (one of whom is also on the spectrum), and her autistic life partner.
A is for Awareness
When and how did you first become aware that something was different?
My middle son Andrew was diagnosed with asperger’s syndrome 16 years ago. I started searching for answers to his behaviors shortly after he was born six weeks prematurely. As an infant, he never napped, and during the night he was up every half hour crying. As he grew older, he had classic signs of being on the autism spectrum, such as stimming, sensory sensitivities, lining up objects, and some delay in the processing of emotions.
In the early 2000s, there wasn’t much readily-available information about autism. Andrew spoke prolifically and didn’t fit the classic autism diagnosis. Even as a former elementary and middle school teacher, well-versed in childhood development, I had difficulty finding answers. It wasn’t until my friend visited our home and kindly suggested our son might have asperger’s, that we had an answer. Coincidentally, my two best childhood friends have autistic sons.
U is for Unique
How has this experience been unique for you and your child?
I was diagnosed on the autism spectrum (aspergers) eight years ago. Because of Andrew’s autism, I was able to realize my own unique neurology. Through our autism journey, I was granted the gift of full self-acceptance. My diagnosis and direct correspondence with over 10,000 individuals on the spectrum have afforded me increased self-awareness, connection, and support. It is our autism, in combination with many collective attributes, which make us uniquely whole beings. Today, my middle son and I have complex discussions on the human condition and the state of the world. He has grown into a young man with much compassion, wisdom, and conviction.
T is for Tools
What tools are available now that were not there in the beginning, that could help other parents?
As soon as Andrew could sit up on his own, I set up learning stations for him throughout the house. I created a line of activities, such as books on tape, building blocks, watercolors, playdough, and toy trains. I’d guide him from one activity to the next. I’d literally pick him up and move him, and sometimes stand behind him to guide his activities. The greatest help for my son was our family trampoline and taking long walks together in nature. These activities provided an outlet for his physical, intellectual, and creative energy.
Watching documentaries together about racial justice and the histories of indigenous people helped Andrew to understand unspoken social rules— and about culture and society in general. Today, I find much support in the autistic community. There are useful sites with personal stories and resources by neurodivergent individuals. Two of my favorites are differentbrains.org and the-art-of-autism.com. Coaching services by autistic professionals (e.g., neuroguides.org) and autism events with autistic voices (e.g., Southwest Washington Autism Conference, Stanford University Neurodiversity Summit) are wonderful ways to gain insights and find tools.
I is for Inspire
As a parent, when you look at your child or children, what inspires you?
I’ve always been amazed by my son’s remarkable mind. Andrew has always been very inquisitive, far beyond his years. In fact, I can recall with clarity the day he was seated in the back of our minivan and asked, out of the blue: “Mommy, who birthed God and how do you know?” He was barely three years old!
One time, his father came home from work and reported: “I had to fire someone today.” In response, Andrew’s eyes grew wide, and he looked up toward his dad, and quietly asked: “Did it hurt him, Daddy, to be on fire?” I am continually inspired by Andrew’s outside-the-box thinking, vast imagination, ability to see both sides of an argument, and his extreme patience and understanding with other individuals.
I’m also inspired by his growth. There was a time in our family when we had specialists giving up and leaving our home with their hands in the air, saying: “There is nothing we can do to help your son.” Today, his younger brother and older brother both agree that Andrew is the most mature, centered, and balanced person they know.
S is for Support
Are there things you struggle with or have struggled with and what types of support do you still need?
There is still a great need for support for older autistic children—teenagers and young adults, especially when transitioning out of high school or out of college. Vocational support is lacking for a large part of the autistic population. This is a high-interest topic of mine, and I’ve written hundreds of pages on the subject. We still have a long way to go in eliminating hiring bias in the workplace and creating safe environments where all individuals feel accepted and a sense of belonging, regardless of their neurology. This goes for educational settings as well.
I made the decision to homeschool my son when he was in third grade. When we tried public school again, sixth grade specifically, I pulled Andrew out mid-year and homeschooled him again. His anxiety went from 100% to about 5% once he was home. It’s one of the best decisions we ever made for our son. The worst memory I have was when Andrew was ostracized at school. That noon hour in sixth grade, when a half-dozen or so of his classmates purposely set about to isolate Andrew. Shortly after Andrew sat down at the cafeteria lunch table, the students all stood up together, on cue, with their lunch trays in hand, smirked, and walked away, leaving him alone. I still tear up over that.
M is for Manage
What keys to success can you leave with parents so they can better manage their day-to-day efforts?
Every child and family is so unique. I can only share what worked for me. To that, I’d say tap into your child’s interests and needs. It’s okay not to be like everyone else. It’s okay to progress socially at a different rate than the typical child. Give yourself a break. Give your child a break.
Know that your love, interest, compassion, and acceptance does loads for your child. Let him/her communicate to you about his/her interests, even when it’s boring! Find different ways to communicate—through the arts, like dance and painting and acting. Through electronics. Through stories. Realize that sometimes it’s okay to go against the grain, go with your gut, tune into that intuition.
In 7th grade, Andrew was frustrated with writing and wanted a break. I knew that a lot of writing is learned from reading. I supported Andrew’s needs; for the English curriculum that whole year, he didn’t have to write! Instead, he was required to read a number of books from various genres. And you know what? In June of 2020, all three of my sons graduated on the same day—our Andrew with a college degree in creative writing.
This article was featured in Issue 120 – Epilepsy: High Risk for ASD Kids