Reflections and Advice from a 20-year-old on the Spectrum
I first met Cosette and her mom when they were referred to me by their pediatric neurologist. He wondered if Cosette, then six years old, might be autistic. Our evaluation affirmed that yes, Cosette was on the autism spectrum, that she was clearly struggling, and that she needed assistance and resources.
At that time, Cosette was often defiant and angry, having frequent meltdowns and retreating into what her mom called the “turtle” position (when overwhelmed, Cosette would curl into herself emotionally and physically). She had early echolalia and inappropriate use of words. She had severe sensory problems – visual, auditory, and tactile. Some days she could tolerate touch; other days she hated it.
Our testing showed that in spite of these challenges, Cosette was living a rich and vivid internal life! It turns out Cosette was a visual thinker and the non-verbal world was where she “lived.” Intelligence testing showed this struggling little girl was very bright—her overall intelligence was in the superior range. She was faster and more accurate in grasping nonverbal concepts like shapes and designs than 99.9% of her peers!
So, it wasn’t surprising to learn that even when she was so young she could barely stand, Cosette loved being in front of an art easel. In our conversation below, you’ll learn the places that early love of art has taken her!
During her childhood, Cosette’s parent’s tried numerous approaches to help her. Academically they tried mainstreaming, special education, and transferring to a different school. Intelligence, even when superior, doesn’t translate into an easy time at school when it doesn’t fit a neurotypical pattern! At home, they tried stickers and charts. With a therapist, they tried social skills and Parent/Child Interactive Therapy.
Her mom will tell you that most importantly, though, they gave her unconditional love.
Twelve years later, when I was coauthoring The Loving Push with Dr. Temple Grandin, I knew I wanted to include Cosette’s story. I wanted to know what had ever happened to that adorable little six-year-old girl with shining eyes and curly mop of hair. Cosette was 18 years old when the book was written, and it details her story up to that point.
Recently, I again caught up with her, and we had a lovely chat. She’s been busy and is in the midst of a big transition right now. We hope you’ll find our conversation and her insights valuable.
Dr. Moore (DM): It’s good to connect again. What have you been up to?
Cosette: I’ve been attending community college the past two years. I’ve studied graphic design. I lived with my parents part of that time, and I tried living in an apartment with a roommate for a while too.
Dr. Moore (DM): Big steps! How was it having a roommate?
Cosette: I had a couple of roommates, but they kept coming and going. Right now I’m getting ready to transfer to a university. I want to major in art. I have already been accepted to one, and I’m filling out forms for housing. I would like to live in a dorm. That would be ideal for me.
Dr. Moore (DM): That’s interesting. I’ve found that some young adults with autism prefer to live alone. What makes a dorm appealing? They can be noisy, and of course, you have to share your space. Does sensory overload concern you at all?
Cosette: I like the idea of being right on campus. It will be easier to get to class. And I think it’s one of the safer options living in the city. Plus a dorm will have more structure than living on my own. It will be more organized. There will be more rules that will make it easier for me to adapt to a strange city.
A roommate shouldn’t be a problem. They have a form you fill out, and you say what type of person you are, and they match you with someone similar. I will say I like to be clean and quiet, go to bed early, and don’t like to party. I don’t like it when people do stupid stuff like leave their clothes on the floor or smoke weed or do nonsense. They can’t bring a bunch of friends to get drunk. And I like not to have years of dishwashing crud stuck on the sink!
Sensory issues do bother me. I’m especially bothered by irregular, unusual sensory input. Like a blinking light or a fan or air conditioner that isn’t working right and is making clicks. I try to soothe myself by distracting myself by focusing on something else. If it’s a light, I’ll move and put my back to it. If it’s a noise, I will focus on one voice or maybe a painting on the wall.
I also have some sensory habits. I will tap my fingers or rub my elbow I need tactile input.
Dr. Moore (DM): You have a good sense of what will work for you, both with college and with the sensory issues. Some parents reading this may have a teen who is capable but afraid to try college. Do you have any thoughts about the transition from high school to college?
Cosette: Starting first with community college worked for me. It wasn’t exactly like high school, but it wasn’t like transitioning right to university. Some of the professors were laid back and flexible, but some had you write longer essays or wanted you to study more than in high school. They were more involved in your work and gave you more direction. You couldn’t just sleep through class!
Dr. Moore (DM): Did anything about college surprise you?
Cossette: College was more complicated than high school, but not by much. The canceling of classes was confusing. There aren’t substitute teachers in college. So sometimes a class is canceled, but you don’t know until you get there!
Also, in college so much is online. The quizzes and your homework are all there. And you can schedule your classes yourself, and you can split them up the way you want. You don’t have to go to classes on Fridays if you don’t want to. I never had to!
Dr. Moore (DM): What advice would you give other students who want to try college but might be nervous?
Cosette: I’d tell them to try to make friends—to join clubs at college. The first day, go sit in the quad with your Nintendo DS system. Bring a deck of cards and start to play solitaire in the community center and maybe someone will approach you. If you make friends, it will help you smooth through the transition.
Dr. Moore (DM): As you know, socializing is hard for some people on the spectrum. How did you learn to do that?
Cosette: My mom helped me get a job, and that helped. She saw a job opening, and I applied. I’ve been working since April 2017. I do product demonstrations at Sam’s Club. I hand out free samples. It’s kind of like selling. I make the samples, advertise them, and get people to buy them.
It’s a good job for me. It caters to my need to be clean. It also helps me learn to be more friendly and open. I had to learn to smile and wave to people. It helped me with my social skills.
Dr. Moore (DM): I recall from the book that you had also started selling your art. Can you explain to readers how that began?
Note: The steps Cosette and her mom took to get to the point of selling her art are described in much greater detail in The Loving Push.
Cosette: I first worked at a small, local harvest festival in 2014. I drew images on index cards and gave them away to kids. If they wanted me to color them in, they had to ask their parents for $1.00 and then I’d do that. I made some money, and I thought, “I can find my niche!”
That’s the thing you have to do. You have to do what makes you happy and what makes you distinct. Go with your favorite thing, and that is how you build your niche. My art is a mash-up between video game characters and other popular media characters from TV or movies. I make silly fusion drawings. I just let my imagination go wild when I draw.
I got known as the person who does this and built a fan base. I like drawing silly and cute things. So now I go to Comic-Con conventions and sell my work.
After I graduate, I want to work in illustration or graphic design. Maybe I’ll do illustrations for greeting cards or books or maybe art for product design for a company.
Dr. Moore (DM): I have no doubt you will succeed. I remember in the book we included a great picture of you, as a toddler, standing with a paintbrush working at your easel. You were barely old enough to stand up! You were adorable by the way. Do you remember that?
Cosette: I remember thinking, “don’t put that in the book – it’s embarrassing!” (She chuckles). But mom thought it was okay, and it was. When I was little nobody taught me how to paint, but later when I could read I got “how to draw” books and then in middle school, I had an art teacher.
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Dr. Moore (DM): Painting can be messy, and you said you like things clean. How is the sensory experience of making art for you?
Cosette: Messiness bothers me. I don’t like painting at all! It smears and doesn’t dry quickly, and it’s hard to correct. I don’t work with chalk or charcoal either. I like my pen or pencil or using computer programs.
Dr. Moore (DM): That makes sense. Okay, I have one last question. If you could illustrate a book for kids with autism, which I think you would be great at by the way, what would you want it to be about?
Cosette: I’d want it to say it’s okay to be this way. The main thing is letting kids know they are not weird or alien; they are just different. They’re not a failure and don’t have a disease. I’d say, “You’re you and here’s how you can understand you.” When I was a kid, I didn’t know what was wrong with me. I’d tell them how to live with autism and how to tell other people they’re not broken.
I’d tell kids, “This is what sensory issues feel like.” I explain how it feels to be awkward or anxious.
I’d help them tell other people what they need too. Like how to tell them they don’t always understand what the person’s trying to say. And that they can’t tell when they’re joking. That they have to be more direct. And not to use sarcasm because they’ll think they are serious.
I’d help them know how to figure out what they need to handle sensory overload and stress. Things like sunglasses when they go to the grocery store because of the lights. Or to bring something to school with them to help them focus. I had a rubber lizard. And I tapped my fingers to the tune of a song in my head because it helped me relax.
I’d tell them there are people out there just like you. And all the nonsense they might hear about autism is not true. And that it’s okay for all of us to be different. What they see on TV may not be like them. The Big Bang Theory is not like me, and The Good Doctor show is not me either. We’re not all savants.
Basically, I’d tell them it is okay for all of us to be different!
Dr. Moore (DM): That’s absolutely true, and it’s a great way to end this interview! Thank you, Cosette!
Debra Moore, PhD, is a psychologist who, prior to retirement from active practice, worked extensively with children, teens, and adults on the autism spectrum. She coauthored The Loving Push: How Parents and Professionals Can Help Spectrum Kids Become Successful Adults (2016) with Dr. Temple Grandin. She contributed two chapters (one coauthored with Dr. Temple Grandin) to The Nine Degrees of Autism (2015) and wrote the chapter Internet and Gaming Addiction in Youth on the Autism Spectrum: A Particularly Vulnerable Population in Internet Addiction in Children and Adolescents: Risk Factors, Assessment, and Treatment (2017). She also facilitates the groups “Autism Spectrum Across the Lifespan,” and “Autism Spectrum HELPING HANDS Mentors” on LinkedIn.com.
This is article was featured in Issue 74 – Every Voice Matters