If you are reading this and you have scheduled an autism screening for you child, I want to say you are an amazing proactive parent for seeking answers.
Answers that could be life-altering, scary.
So, first take a deep breath.
Now take another.
You are not alone.
When my partner and I began this process for our 3-year-old son, we didn’t know what we were dealing with. We had been told he was likely speech delayed, but we had no idea autism was also a possibility. The idea of speech delay felt harsh enough. But autism?
I started looking a little more closely and noticed that some of the signs were there: inconsistent eye contact, a lot of pointing and not a lot of talking, lack of interest in other children. This new world was frightening enough for me, and my habit of constantly evaluating symptoms was painful. I mean, you're supposed to spend time enjoying your child and their quirks rather than monitoring and pathologizing his every move.
We'd reached this point after an initial evaluation found that my son was speech delayed. He was at that transitional age when we thought he'd start speaking any day now—but it didn't happen. Then we found out there's a link between lack of speech and autism, so we immediately booked a visit with a developmental pediatrician.
We are lucky to live in city like Los Angeles and to have access to a team of specialists who could perform the screening within a few weeks, which is kind of unusual. Some parents wait months for a full evaluation. The developmental pediatrician told us that our son's inability to speak could be the reason he demonstrated behaviors consistent with autism. We'd need a full evaluation to know for certain.
Right now I want to pause and say that, if you are in this situation, my heart goes out to you. Not knowing was truly the hardest part for my little family. I also want to say that, while waiting is the worst feeling, time can actually be your friend. (It was in our case but more on that later.)
'How many words does say? Does he engage in repetition? Can he pull up his zipper? Does he have stern routines? Does he have food preferences? Does he show interest in people or only jobs? Why doesn’t he know what “fishing” is? Do you speak to him in Spanish?'
Even before we made the appointment, I was ready answers, no matter what the outcome. In the end, I love my child no matter what. During this not-knowing phase, I accepted that we all have our challenges in life. Sometimes those challenges show up sooner, rather than later. Case in point: me.
When I was 12, I had my first depressive episode. My parents did not know how to deal with it. They didn’t even know what it was. It would be almost a decade before I could identify my feelings with a name, a diagnosis and treatment.
So when seeking answers about my son, I vowed I would get the information we needed—even quit my job if necessary—to support my child. I would get him the best therapists, best doctors. My son would thrive no matter what.
In the meantime, I tried to learn as much as I can about the speech delay diagnosis we had. I read books to learn how kids acquire language (it’s quite fascinating), did floor exercises with him and provided as many opportunities for interaction as I could.
I parented in overdrive. (For my own benefit, I did daily affirmations to get through moments when fear overwhelmed me.)
On the day of the evaluation, we prepared for a long morning. Our son would be seeing a speech therapist, an occupational therapist and a psychologist—all under the supervision of a developmental pediatrician specializing in autism. The doctor would stand behind a two-way mirror watching the whole process. We also had a caseworker assigned to us to answer questions.
Our son did amazing given that he was asked so many questions and told to perform tasks for about two and half hours. He had to identify objects, jump, button his shirt and interact with strangers. He did everything—and even had a fairly upbeat attitude.
I, on the other hand, wasn’t doing so well. While he was in evaluations, we were being asked to answer a multitude of questions about him.
My partner had this 'How did we get here weren’t we just having drinks and singing karaoke 3 years before?' look on his face.
“How many words does say? Does he engage in repetition? Can he pull up his zipper? Does he have stern routines? Does he have food preferences? Does he show interest in people or only jobs? Why doesn’t he know what “fishing” is? Do you speak to him in Spanish?”
The questions started to jumble, and my anxiety level started to rise.
In the middle of this, my son kept coming over to show me the toys his new friends were showing him. My partner had this "How did we get here weren’t we just having drinks and singing karaoke 3 years before?" look on his face.
When the whole thing was over, we went for pancakes. The baby decided this was the time he would lose his patience and started throwing his food everywhere and screaming. In the middle of this, we got a phone call from the doctor’s office. They would have the results ready in two weeks. They gave us the option of receiving the results by phone.
“This must be a good sign!" I said. "They wouldn’t give us an autism diagnosis over the phone, right?”
We cried on the way home. I had to hold on to this hope. I already knew worrying wouldn’t do me any good. I had even reached a point of acceptance—I released attachment to the the outcomes. When you really think about it, there is so little in life we actually control.
We'd opted to get the results in person.
The day of our appointment, we also found out that our dear friend had just gotten her dream job. She was going to serve as assistant dean at an Ivy League university. We decided to take this as a good omen.
I cried on the drive to the doctor's office.
We sat in the waiting room, the local news buzzing in the background. We talked about inane things. We knew our lives were, quite possibly, about to change dramatically. We walked quietly into the doctor’s office. We sat. We held our breath.
As we prepared for an outcome we had never even considered when we first set out to have a baby, I reflected a lot on my need to control situations and outcomes. I realized how pointless—and impossible—that really is.
He told us our son was not on the autism spectrum.
Indeed, our son was speech delayed. But they believed he would catch up to his peers with continued support and speech therapy.
I held it together until we left his office. Then I cried.
I finally had the answers I sought. But I had put myself and my relationship through so much in the meantime.
I know for many people the outcome will be different. I want to tell you that I was prepared for that diagnosis, too. Here’s what I knew going in to that office: my son would be OK no matter what. After navigating the murky waters that parents feel like they're drowning in when confronted with something of this magnitude, I knew my son would thrive with or without this diagnosis. How? Because he had me.
I wish you the same resolve. If your outcome is different, here's a toolkit I found that helps people navigate the first 100 days after a diagnosis.
As with all big experiences, I learned something. As we prepared for an outcome we had never even considered when we first set out to have a baby, I reflected a lot on my need to control situations and outcomes. I realized how pointless—and impossible—that really is. As someone with anxiety, I sometimes live too much in the future. I fail to celebrate the now, the moment. That is my lifelong battle. I fight it everyday. Ultimately, my fear was that my child’s future would go in a direction I didn’t anticipate. But here’s the reality: I don’t control the outcomes of his life. So the biggest lesson this time for me was surrender. I learned to celebrate my child how he is, where he's at, every day.
I learned to just let it go and focus on what I can control. What is, will be.
And know this: you love your child no matter what. That is the single most important factor in their life. It’s what will compel you (and, eventually, them!) to fight every fight that is needed. It will make all the difference in the world in your life and theirs.