#MindrMama Heather Savatta thought she knew everything she needed to know about autism. However, her perspective and knowledge base changed dramatically when her older daughter was diagnosed while in Pre-K. In recognition of World Autism Month, Heather shares her family's experience navigating the path to her daughter’s diagnosis and what she has learned throughout this journey so far
I didn’t know the signs of autism until September 7th, 2018. Well, scratch that. I thought I knew the signs of autism: a child who is non-verbal, makes no eye contact, shows no emotion, and is in need of full-time care. Since that is what I (thought I) knew of autism, I felt confident I would be able to spot it if I saw it - especially in my own child. But on that warm, sunny September afternoon, picking up my then four-year-old daughter from her second full day of Pre-Kindergarten at a new school in Brooklyn, I was proven very wrong.
At pick-up time in the school yard, I saw my daughter’s new teacher waving me over to where they were standing. I expected a glowing report on how the day had gone, about the new friends she was making or how much of her lunch she had eaten. Instead, her teacher said with blunt force, “I want to let you know that I think your daughter has autism. I used to teach special ed, and I feel quite certain she is autistic.” No pleasantries, no anecdotes from the day. I was speechless. My first thought was denial. How could this new teacher who barely knew my child or my family make such an assertion? I stammered, “I don’t think so, no one has ever said that to us.” The teacher stared at me, clearly waiting for me to continue. “I mean, she has been in preschool for the last two years, and none of her teachers have ever said anything that even hinted at anything even remotely...” I trailed off, unable to finish my train of thought. I ended the conversation just as oddly and abruptly as the teacher had started it, nervously grabbed my daughter’s hand, and turned to face a sea of parents standing in line to pick up their (probably) non-autistic children. I forced a smile toward them and walked off with my daughter in tow, feeling both defensive and devastated in equal measure.
On the mile walk home, while in the presence of my daughter, I called trusted friends and family to tell them what this teacher had said to me. To my great relief, they all seemed to be as nonplussed as I was. “No way, I know her. This does not sound right to me. Can you complain to the school?,” I heard one friend say. “There is zero chance,” another insisted. “She is so smart, how could a teacher say that to you? And after only two days!?” exclaimed a third. Exactly. Exactly. Exactly. My thoughts exactly. And yet…
I spent all weekend researching, emailing my daughter’s past teachers and caregivers, and looking over her reports from nursery school. I spent hours digging through old iPhone videos and matching up her smiles and first words to the developmental timelines I found online to prove she did not have autism. There was no chance this teacher was right! Right? She is the brightest girl ever, I heard myself telling no one. She hit every milestone at every checkup months in advance, I reasoned to our dog. She has no visible delays. She has friends. She hugs me and says, “I love you!” My husband nodded his head in agreement. This teacher had to be wrong, and I needed someone in a position of authority to back me up on it.
I quickly found an amazing psychologist who could perform a private neuropsychological evaluation to rule out what the teacher said, but did this did not come cheap. I was sure that every penny of the out-of-pocket cost of $5,000 would be money well spent. While the Department of Education does have a system in place for evaluating students, I had neither the willingness nor the patience to wait for the agency packet explaining the process and then another 2 or 3 months for results. I wanted answers as quickly as possible so that I could put that teacher in her place.
As a next step, the private psychologist came to my daughter’s school to observe her peer interactions. After a full day of careful observation, the psychologist called me and reported that the classroom setting was loud, overpopulated, chaotic, understaffed, and a much different environment than the small neighborhood preschool where my daughter was previously enrolled. “Aha!” I thought to myself. “This explains everything. We have our answer. The school — which sounds more like a circus — is clearly to blame!” Feeling prematurely vindicated, I phoned all the same people with whom I had spoken on that long walk home on the second day of school, and said things like, “What a relief! It sounds like she just has some sensory issues” and “She just needs more time to adjust.'' Phew, I felt better.
The next step in the evaluation process was for our daughter to do two full days of intense testing of her cognitive abilities and social skills. I was sure she’d ace this. After all, she had always reached milestones very early. I say this not as a biased parent, but as the recipient of many a doctor’s, caregiver’s and teacher’s remarks noting her advanced language and comprehension skills. And even without these endorsements, I knew my child. She could say two words in context by the age of 1. She could recite stories back to me by memorization. She potty-trained earlier than all of her peers. She knew every single detail about snakes.
While we were often told she was smart for her age, it was her normal and ours, which is why I was able to laugh off the quirks that accompanied her intellect. Our pediatrician would ask all the screening questions for the most common signs like lack of strong eye contact, delayed speech, repetitive movements, or meltdowns. None of these signs were present. There can be other signs like impulsivity or compulsive behaviors, but we had less knowledge of these. For instance, she spent so much time organizing her toys into perfectly straight lines (which we found adorable). When she started a 2’s preschool program, we noticed right away that she had trouble communicating with her same-aged peers. She could easily express herself, but she would often be left feeling frustrated when they didn’t understand her complex thoughts. She retreated and spent a lot of time alone, but we never saw this as anything more than her being an independent lone wolf who just liked to do her own thing. She was often in a corner alone with a book or making sure a block tower was perfect lined up while the other kids engaged in imaginative play. When I think back to these observations, I now see them in a different way.
The psychologist called me on the phone in late October to tell us it was time to come in and hear all the results. My husband and I arrived and sat nervously yet confidently in the room waiting to hear what we were expecting (i.e., something along the lines of, “she has sensory issues,” or, “she has a bit of anxiety”). As the doctor began her explanation, I couldn’t wait and just jumped in with: “So, she doesn’t have autism, right?” With that, the doctor put her papers down and with a heavy sigh, looked me right in the eye and said the unthinkable: “Technically, your daughter does have autism.”
And just like that, I stopped resisting the word “autism.”
What? Wait, what did she just say? My husband and I looked at each other, then back at the doctor who explained that while our daughter is as gifted and exceptional as we had been often been told, she is also socially unaware, lacks key executive functioning skills, and has impulse control issues. And just like that, I stopped resisting the word “autism.” As the doctor spoke the words, I thought back to some of my daughter’s quirks — so fresh in my mind — and it all made sense in that moment. So this is why she is so smart but still runs into the street. This is why she can count to 100 but can’t play side-by-side with new friends. Unlike previous “Aha” moments that had me grasping at straws for explanations and reaching for premature conclusions, this is the moment that stuck. It made total sense.
At times, it feels like a part-time job juggling all the support pieces, tests, paperwork, and red tape. However, it’s a job I happily embrace because just like nearly every other parent on planet earth, I just want what’s best for my child.
This is autism. It’s not black and white. It’s not verbal or nonverbal. It’s a million shades of gray. It was always there. Our daughter was the same sweet, smart kid but now with a new label. I still feel frustrated with how the message from our teacher was delivered on the playground at pickup and hope next time she breaks this possibly life-changing news to others in a less shell-shocking way. On the positive side, we now have insight into the complex neurological puzzle that is our child’s brain. Things make sense a bit more. Now we can work toward supporting her, getting her the right services, and into a school environment that will help her thrive and reach her highest potential. At times, it feels like a part-time job juggling all the support pieces, tests, paperwork, and red tape. However, it’s a job I happily embrace because just like nearly every other parent on planet earth, I just want what’s best for my child.
April is World Autism Month. Like many, I spent much of my life unaware of the broad range of signs in which autism can manifest. I now encourage parents, but really people everywhere, to familiarize themselves with autism. Times have changed. According to the CDC, in the 1980s autism prevalence was reported as 1 in 10,000. In the nineties, prevalence was 1 in 2500 and later 1 in 1000. In 2018, the CDC determined that approximately 1 in 59 children is diagnosed with an autism spectrum disorder (ASD).
I’d advise all new parents to know the signs and raise any odd-seeming behaviors with your pediatrician. Listen to others who observe your child, but don’t rely solely on your child’s school. In our case, the school she’d been enrolled in for two years missed the signs, whereas the school she’d attended for two days immediately spotted them. And the two people who knew her better than anyone since the day she was born — her mother and father — were blindsided! Lastly, have your child evaluated if you aren’t sure or need a second opinion. I am grateful I was proven wrong, and am now able to advocate for my child appropriately in the years to come.
There’s a saying in autism circles - You meet one kid with autism, you have met one kid with autism. The combination of signs and tells of autism look different to every family and every child.
For more information about autism, see https://www.autismspeaks.org/learn-signs.
#MindrMama Heather Savatta is a mom of two. Both of her children's names can be subbed for emojis which the grandparents do not understand, but Instagram gets it. She is a native New Yorker who currently resides with her whole crew in Williamsburg, Brooklyn. Heather is a full-time working mom who takes the ferry to the Financial District each day to try and make digital ads just a little bit better for the internet.