Our Autism Diagnosis Journey

As I sit down to write about the last year and a half of our life, I realize how naïve I was five years ago to think I wanted to live an ordinary life. I thought my husband and I had it all together: we got married, built a house, started our careers and our family. Our beautiful, beloved Charlotte was born in August 2018. She came four weeks early due to preeclampsia and was born breech. I ended up with a scar and she had a four day NICU stay for low blood sugar. I thought this was the hardest five days of our lives.

Charlotte was a great baby. She slept through the night at 4 months. She was happy, agreeable, started babbling at 11 weeks, loved to laugh and play, ate pretty much anything we gave her for the first year of her life and her favorite thing to do was look at books. By 12 months old, she was saying simple words, at 13 months walking unassisted, by 14 months singing  her ABC’s and at 15 months saying simple phrases. She started Montessori school at 17 months; soon after, she could count to 10 in two languages. At her 18 month well-check, where they routinely screen for autism, her pediatrician heard her singing the ABC’s and Twinkle Twinkle and said, “I have no concerns for Autism.” Charlottes ASQ-3 (milestone screening test) and MCHAT (Autism screening test) also had indicated no concerns.

Then in March 2020, the whole world shut down due to COVID-19. Charlotte was 19 months old. We kept her home from school the first six weeks of the pandemic because I’m an emergency physician and was in contact with Covid-19 patients every shift. At the time, I couldn’t fathom sending Charlotte to school and potentially exposing an entire school to this mysterious virus. As a mom, I was scared and wanted to protect my family. There was so much uncertainty, but I did not anticipate how much more complicated life was going to get.

My husband was working from home and was our full-time childcare for six weeks. I went to the hospital, wore my N-95 mask the whole shift, came home and showered immediately so I felt safe hugging my little girl and family. My days off were filled with playing outside, coloring, nursery rhymes and a growing sense of isolation. The long days started with “Good morning, Mommy!” and a beaming smile that made shifts at the hospital bearable. I taught Charlotte shapes, colors and spent a lot of quality time with her. She was such a smart toddler; however, through teething, tantrums, defiance and  picky eating our child’s strong-willed personality began to present itself. We chalked it up to “typical” toddler behavior.

Eventually, we sent her back to school when it was clear the risks of Covid-19 in children were significantly lower. We thought her defiance and tantrums would improve with a schedule and being with other kids.

In October 2020, we got the first vague call from school. We were informed “Charlotte is twirling” and “not paying attention during circle time;” however their biggest concern was she had a tantrum where she hit her head. The school recommended we contact ECI (Early Childhood Intervention). I called her pediatrician and ECI. Covid-19 restrictions meant we had to do the assessment by phone. Her ASQ-3 for 23 months seemed on par for her age and no intervention was recommended.

In November 2020, we received another phone call about her tantrums. The communicaton was still vague. But her tantrums were growing in severity at home, especially when she didn’t get her way.

In December 2020, Charlotte was 27 months old and we started potty training, which ended in screaming and toilet aversion. We decided to try again later. She LOVED Christmas music, but specifically the Amazon playlist and it had to go in that order. I started noticing her “grabby hands” yet I thought this was similar to her infant signs of excitement and thought nothing of it. We didn’t realize it at the time, but we were witnessing stimming and the slow regression of our daughter.

On January 11, 2021 our whole world changed. I was 35 weeks pregnant, two weeks away from maternity leave, and an owner of Charlotte’s school tells me over the phone that my daughter has 45-minute tantrums almost daily, speaks minimally, doesn’t participate and stands in a corner instead. All while the same child was asking me, “More blueberries please?” The next day the owner sent a video of Charlotte’s “tantrum” that we would learn in the coming months was actually a sensory meltdown. We were told they did not have the staff to take care of her. We both worked, had no childcare and I was weeks away from giving birth. Charlotte had regressed at school but was doing “fine” at home. We were in denial. I took her to the pediatrician, who gave referrals for ECI again and a private therapist.

During her first few weeks at home full-time, her regression became more obvious and it felt like Charlotte slipped further and further away. She stopped looking us in the eye or responding to her name. We thought it was out of defiance.

In February 2021, our son was born, and Charlotte wanted nothing to do with him. Her behavior worsened. We tried time out, stern talking, taking things away, gentle parenting, talking it out… and nothing worked.

A week after our son was born, Charlotte started seeing a private behavior therapist bi-weekly. Everything else was virtual. ECI evaluated her again, via Zoom, and stated she “barely” qualified for services because she was a year behind in language. This made no sense to me. She talked, said her ABC’s, could count, knew five books word for word and definitely said over 50 words. They paired her with a behavior therapist who, for six months, told us Charlotte was acting out because brother was born and, because we were in denial, we leaped on this answer.

In March 2021, at my son’s pediatric appointment, I saw a 2.5 year old boy talking to his mom in sentences. I realized while watching that Charlotte does not have functional language. I cried so hard during that appointment; the pediatrician listened and made a referral to a speech therapist.

In April 2021, the private behavioral therapist we enlisted was the first person to send a raw, real, objective email about Charlotte. She recommended my smart, strong-willed daughter be evaluated for autism. This was the first time anyone spoke the “A” word to us.

Then our pediatrician had a hard conversation with me. She provided some positivity about the process and diagnosis of autism, stating there were enough professionals concerned about Charlotte’s development that she was going to refer her for an official evaluation. She explained that an Autism Spectrum Disorder (ASD) diagnosis wasn’t going to limit Charlotte. Instead, it was going to enable her to thrive, opening up doors for the therapy and resources she would need. This was the true turning point for us — we became Charlotte’s advocates. The earlier the intervention, the better.

We read, researched, watched videos. I bought flash cards, specific toys for her development. I cried, A LOT. We struggled and we fought. It was exhausting, hard and relentless. I was taking care of a newborn, recovering from a c-section and my husband was working full time and being a caregiver. We had no avenue for childcare, and I was facing the end of my maternity leave.

I found a special education teacher to be our summer nanny who was trained in ABA therapy (Applied Behavioral Analytics). She started private sessions with Charlotte 4 to 6 hours a week. She taught Charlotte her first functional sentence: “I want…,” which took three sessions. Charlotte could finally say “I want an apple” instead of having a meltdown. It made me sad realizing she had been struggling so much to communicate with us, and we were oblivious.

Charlotte started private speech and occupational therapy and was “barely” accepted into the special ED program at our public school.

Even with a plan of action, Charlotte was still regressing. From 27 months to 3 years old, our beautiful, charismatic baby girl gradually became someone we didn’t know anymore.

Explaining the signs that Charlotte showed is hard because a lot of it became more apparent with age and clearer when we look back at pictures and videos. There were days she truly seemed like a typical toddler with a speech delay, but other days were full of sensory meltdowns and regression. Charlotte stims — we called them her happy hands — which is her way to show excitement and happiness. When she was younger and we thought she was speaking in sentences, she was actually scripting phrases from books, shows, things she had heard from us.

On Sept. 24, 2021, Charlotte was diagnosed with ASD by a developmental pediatrician and we became a special needs family. We knew it was likely, but my husband and I were numb. Our brains understood it, our hearts hated it. You go through the stages of grief multiple times. You ask yourself what you as a parent did wrong. You grieve the child you thought you were going to raise. You learn that it’s OK to not be OK. No one explains this path of the unknown after diagnosis; you have to decide your child’s future. People and professionals only advise but it is up to you as their parent to understand your child and their needs. We analyzed, ruminated and sought after all the information. Our life revolved around taking her to a growing list of interventions, which quickly became another full-time job.

The developmental pediatrician stated that studies show children with autism who get full-time, 40 hours a week, early intervention (therapy before 5 years old) were able to overcome a lot of their struggles. She also explained there is no cure or medication for autism; therapy is the only treatment.

Charlotte has been in ABA therapy 35 hours a week since November. She has a team of advocates whom she knows by name. I also enrolled Charlotte in equine therapy, music therapy and private weekly special needs swim lessons. She is surrounded by kind, understanding, passionate, caring individuals who I wholeheartedly believe are changing the trajectory of our daughter’s life.

Charlotte processes life differently than others. The variety and intensity of therapy allows her to learn coping mechanisms and skills that a lot of neurotypical children learn by osmosis. Sometimes it takes her weeks or months with lots of repetition and different reinforcement. Therapy does not stop when she comes home; we work with her every waking hour and are learning how to adapt and teach her in different settings.

In just 4 months of full time ABA therapy, her meltdowns, that averaged 28 minutes when she started, have improved to 5 minutes and are no longer daily. Through speech therapy she is now speaking in sentences. She is not conversational yet, but uses functional phrases like a champ. Potty training has resumed and she is crushing what we had thought was impossible. I was able to take the children on a walk by myself for the first time since the birth of my son, who is 13 months old. She held my hand while crossing the street and stayed either next to the stroller or in the stroller the whole time. She followed directions like a typical 3.5 year old. She said her brother’s name for the first time, asked to hold her big sister’s hand for the first time, learned how to answer “What’s your name?” and “how old are you?” She asked her dad a “why” question for the first time.

The unknowns are the hardest. Will I ever be able to carry on a conversation with her? Will she ever be able to tell me how her day was? Will I be able to take her to the Nutcracker ballet like my mom took me as a little girl? Will she drive? Will she go to college or get married? We will embrace her and celebrate her wholeheartedly, regardless.

We have hope. God gives us days where she is the essence of joy and our hearts overflow. Her story is filled with possibilities most families take for granted. She has come so far and we celebrate even the littlest of wins.

Special needs families: please understand you may feel alone, but you’re not. We found a community we can text, follow online, send messages via social media, talk to on the phone, meet for lunch and meet for play dates. So many moms who have children with Autism are ready to talk and walk beside you through this diagnosis. They welcomed me with open arms. Special needs families understand each other; we get the unspoken challenges, fears and unknowns.

To parents watching their child struggling: don’t be afraid of being honest and vulnerable with your pediatrician. ASD is a spectrum and every child with ASD presents differently. If you’re concerned about your child’s development, ask questions and seek advice. Advocating for your child whether they are neurodiverse or neurotypical is our job as parents.

To teachers, therapists and medical professionals: have the hard conversations. It’s the right thing to do. If you see a child struggling, you’re doing them no favors by speaking with ambiguities to the parents. We were the parents that needed the hard but loving conversation. Don’t be an additional delay in a child’s need for intervention, change a child and heal a family.

To Charlotte’s ever growing team: whether you have been with her for one day or almost a year we are so unbelievably grateful for the love and work you have poured into our daughter. She is and will make a difference in this world.

To Charlotte, Char Char, Sissy: you continue to shed joy into our world. We believe in every part of you and all the amazing things you have and will accomplish.

Michelle and James Teeter live with their beautiful children; Elizabeth (9), Charlotte (3), Elliot (1), in a suburb of Fort Worth, Texas. Telling their story is one of the first steps in their Autism Journey as a family; they hope to continue to shed light on Autism Awareness and Acceptance and the importance of early intervention for any special needs child.

Photos by Mallory Shelton Photography