After commuting from Hyde Park to West Loop twice daily for the better part of a year, my family and I were really excited to move to the Little Italy neighborhood. The commute that once took 20-40 minutes one way, was being cut to 5 minutes! Plus, we were all excited to be within walking distance of our beloved Mario’s Lemonade. However, the transition proved to be more difficult than I had imagined. My 3 year old, Mei, had always struggled with change and new situations. She loved the comfort of familiar routines. And moving from the home where she was born to a new apartment in a new neighborhood was really going to shake up her world.

At the time of the move, Mei was in speech therapy because her language skills were about 6-12 months delayed. As a result, she often yelled or screamed when she wanted something or when she was displeased – and her scream rivaled that of a teenage girl in a horror film (I have witnesses who can confirm I’m not exaggerating on this point). Her temperament seemed to be mellowing with her improving speech skills, but the move sent her stress levels skyrocketing. The smallest disappointment could send her into an inconsolable fit of crying and screaming. She put her hands over her ears whenever she anticipated unfamiliar or unpleasant situations and the usual remedies failed to calm her. This state of anxiety lasted several weeks, and it broke my heart to see her so distressed and withdrawn.

As I mentioned these issues to her speech therapist, she suggested Mei might have sensory processing disorder (SPD) – a condition where the brain has difficulty receiving and responding to sensory input properly. After some research, I found many signs of SPD in Mei. I also discovered that there is a high correlation of incidences of SPD and autism spectrum disorder. I dismissed this correlation, because my daughter definitely was not on the autism spectrum. My sweet nephew, Eric, had been diagnosed with autism just a couple years earlier, and Mei was nothing like him. Yet as I spoke with my sister, Kari (Eric’s mom), she gently suggested I get Mei evaluated. Her suggestion, though wise, sent me into a panic.

I started researching autism. I scoured the internet for every article I could find. I had long phone calls with a friend who has two sons with autism to learn of her experiences. I bombarded another friend with emails, because she is a clinical psychologist specializing in autism and picked her brain about what autism looks like and how to get a diagnosis. I called my sister almost daily looking for more answers and emotional support. I spent weeks calling every doctor and psychologist in the area who gave autism evaluations, trying to find someone who took insurance but didn’t have a 6-10 month wait list. And at the end of the day I would lie down in bed and cry.

I wasn’t sure why I was having near-nightly breakdowns. When my nephew had been diagnosed with autism, I remember trying to comfort my sister by telling her, “This diagnosis doesn’t change Eric. He is still the same lovable boy that he’s always been. This diagnosis just helps him get the treatment he needs.” And I kept telling myself this same thing about Mei: “Getting a diagnosis doesn’t change who she is. It just enables her to get more help. So why can’t I stop crying?” There was something about getting an autism diagnosis that terrified me, but I couldn’t pinpoint why it bothered me so much.

One day I was walking up the stairs to my 3rd floor condo with my 3 kids, when we saw one of my new neighbors in the hall. Distressed about meeting someone new, Mei greeted her with her classic high-pitched scream. My neighbor responded, “What’s your problem?” I stopped myself from snapping back, “She’s 3 years old, in a new place, and probably has autism! What’s your problem?!” And just replied, “Sorry, she has some stranger danger issues.” And that’s when I started realizing why the diagnosis worried me so much. Of course a diagnosis wouldn’t change how much I loved Mei, and it wouldn’t change how wonderful she was. But if it was autism, her struggles and quirks weren’t just a phase she would outgrow. If it was autism, she would encounter people throughout her life who would judge her by her idiosyncrasies and inadequacies instead of seeing the kind, creative and brilliant girl inside. If it really was autism, much of her future suddenly seemed uncertain. Would she go to a mainstream public school? Would she have friends? Would she go to college? Would she be able to live independently? Would she get married and have her own family? Would she be able to find happiness and fulfillment in her life? Before this point the answer to all those questions in my mind was most likely, “yes.” But now, all the answers turned into a solid “maybe” with the possibility of “maybe not” starting to come into view.

As I pondered these questions one night, I looked out my balcony window at the Chicago skyline and saw the the skyscrapers lit up in blue for Autism Awareness month. It was a beautiful symbol of united support for this mysterious condition. However, looking at this magnificent blue skyline, I couldn’t help but feel angry and confused. I didn’t want to be an insider in this community. I didn’t want my daughter to be given a label that carried so much stigma. I wasn’t sure where this new path would take us, but I was sure I wasn’t ready for it.

But ready or not, we were immersed right away. We were fortunate to find a place that was able to evaluate my daughter within 2 months, instead of the typical 6-10 months. About a week after receiving the diagnosis, she was able to start attending a fantastic therapeutic day school where she had daily group therapy sessions and a fun and flexible learning environment. We were able to increase her weekly therapy hours and start into ABA therapy and an autism friendly dance program. She was really starting to thrive – and even making actual friends!

I feel beyond blessed. An autism diagnosis can be intimidating, and there are a myriad of ways things can go downhill. But I am fortunate to have a strong and growing network of support. I have knowledgeable friends and family who guided me through the diagnosis and treatment options. Mei was blessed with a strong team of therapists and teachers who loved her and set up individualized care plans based on her strengths and weaknesses. I continue to meet experienced parents in waiting rooms who share their autism stories as well as good insider tips on books to read and how to navigate Chicago Public Schools. Mei is set up for success, and now when I see the city lit up in blue, I am reminded of all the compassionate people surrounding us in this new community.

I also feel fortunate that we can afford all the services we want for Mei. We can afford to pay our family maximum out-of-pocket expenses each year, and our insurance covers everything else, so Mei can get as much therapy as we want to schedule for her (last year I think she racked up 1500+ hours). Within a few months of getting Mei’s diagnosis, I met two families who had children with autism close to Mei’s age, who didn’t have insurance or other financial means to get even close to the services Mei was getting. They were able to get once a week therapy through state-run early intervention services, but that was all. As happy and grateful as I am that my daughter gets a full schedule of exceptional services, it breaks my heart that a considerable number of children and adults have limited treatment options due to financial restrictions. All individuals with autism deserve access to services that will better their lives and help them reach their potential!

So with my new love for the local autism community and a desire to give all individuals affected by autism access to effective therapy and supports, I started Chicago Autism Network. Our mission is to help families find and afford effective autism therapies. This will be a space where affected families can learn more about autism and how to navigate through life with an ASD diagnosis. This will be a space where individuals with autism and their caregivers can connect with local service providers who fit their specific needs. This will be a space where we can share stories, wisdom and insight to help each other along this journey. This will be a space where we can pull together and financially support those in our community who can’t afford needed treatment. This space will be a work in progress, but I hope we can lay the groundwork to strengthen our autism community, one person at a time.