Our Autism Story

This is the first day of a 30-day series I originally wrote for Facebook, in April 2021.

April 1, 2021

I started writing this post just about a year ago when we first received our diagnosis; for myself, or maybe for my son… so we could look back on this together. I don’t imagine I’ll remember the details so vividly as all my kids get older and I don’t want to forget. Now I realize I’m writing it for others because this is the kind of post I would hunt the internet for late at night when my mind was racing and I wanted a real parent’s experience.

I’m going to start at the very beginning. But first, I’ll make it clear that I never thought my son had autism. In fact, it was our sweet friends that sort of mouthed out the words with me one night at dinner, about a half a beat before I did. And that was the moment when I finally let the thought come out of my mouth for others to hear, all of a sudden it couldn’t be anything BUT autism. And it was clear that others saw it before I could. So, what I have to say, I say in hindsight only.

BIRTH

M’s birth was 100% basic and the hospital stay uneventful. The only thing worth noting is that he was administered the newborn hearing test twice. He failed the first time so they did it again right before we left and he passed.

I noticed immediately there was something a little bit different about him. But when I say different, I just mean in comparison to our first son. And “good” moms don’t compare their kids, right? Lies. He was so…. soft. I know that sounds weird but he really was. It was like holding a pillow… a pillow with a massive head. When you set him down it was like only his outer skin was holding his intestines in. Later this was identified as low muscle tone. He also slept… a LOT. It wasn’t alarming or anything, but wow he was a champion napper. I joked during the first two weeks that he really did have eyes and promised friends he might open them one day. More than anything though, it was just a feeling.

3-6 MONTHS

As the months went on M continued to be the easiest baby ever. He would just lay in his bouncy seat totally content. He even found a way to rock himself by kicking one leg, it was amazing. I would sit on our back patio in the evening with a glass of wine and two kids, one rocking himself, and think, “Wow, I am a rock star at this two kid thing. Go me!” The other thing that had me feeling pretty great was that M was a big-time snuggle bug. Our older son was a great baby and was loving in his own ways, but he nursed to eat and was happy to wiggle away and do other things on his own. Nursing M felt like I was really providing not just food, but the physical touch he needed. He didn’t have to be held all day, but he sure did enjoy it.

M never took a paci, not even in the hospital, and ultimately never took a bottle. Not once, and boy did we try. I must have tried every bottle out there but it never happened. As a result, he went with me everywhere. Everywhere. I remember sticking him under a table at a vendor open house I did for PLP, I took him to industry happy hours, on a girls trip, a beach vacation, to Grace, Eddie V’s, Capital Grill…. he was just so content, and on the rare occasion he did cry, I nursed him and that solved any fussiness. I know they say if they’re hungry enough they will take the bottle and we discovered the hard way that was not the case for him. And I was really fine with that. He was a joyous baby and so darn easy, there wasn’t any reason NOT to bring him everywhere I went. He only had two triggers… he absolutely hated to have his diaper changed, and from almost birth to age 2 would fight me like a rabid animal when I tried to get him in the car seat.

6 MONTHS

About 6 months is when we started to see a few things that seemed… delayed. We introduced food but he had no interest. I couldn’t even get it in his mouth. He would just push it out and gag at even the tinniest spoonful. He wouldn’t use a sippy cup either so his only liquid was breastmilk. He also wasn’t sitting up or rolling over. In fact, he had to have a helmet and I really blamed myself thinking, he was so contented I just let him lay there and he got a flat head!! But even in the helmet, he was adorable and we all thought it just added to his cuteness factor. He also had a cosmic pull towards the television. It was something we found hilarious, not really worrisome. We noticed he had favorites, in particular the “Letter E” song on Sesame Street. Really anything that involved letters was a fascination for him. I now know this is called hyperlexia, an intense fascination for written language at an early age and a precocious ability to decode and read without being formally taught.

By nine months M was finally able to sit up independently without falling over, and I discovered that he liked crunchy foods. He ate rice rollers, mum mums, and cheerios. He was never interested in the finger foods that our older son had enjoyed.. buttered pasta, tofu, cubes of avocado, etc. He really just wanted crunchy snacks and an occasional pouch, which to date, is the only way he has ever consumed a vegetable. He wasn’t talking so we taught him baby sign language and he picked up on it right away. He signed “more,” “please, and “thank you” at all the right times and we joked that although he didn’t speak, he was certainly the most polite baby we knew. Somewhere between 9 months and 12 months he was able to say “mama,” “dada”, “pees,” and “eww eww” (thank you.)

18 MONTHS

At 18 months I was starting to get a bit concerned. M’s diet was very limited, he would rarely attempt new foods. He did finally begin to walk around 18 months, but he never crawled. He did this scoot thing where he would lean on one hip sitting down, prop the other leg up, and then use his arm to sort of catapult himself forward. I also remember he was very hit or miss when it came to responding to his name. I would come up behind him and clap, just checking to see if maybe he couldn’t hear. He would turn around and I would breathe a sigh of relief and think, “well, he’s probably just a really focused person like I am.” He did have good eye contact and although I never thought about autism, I did note that he looked me in the eye. His ability to hold eye contact has faded over the last several years though, but again, making eye contact was an almost painful experience for me until my late 20’s so it’s not something I put a lot of stock in.

I remember around 22 months or so I was looking at the Timehop app. On the chance you aren’t familiar with it, Timehop pulls the posts and photos you’ve made from places like Facebook, or Instagram and tells you what you posted on that day, the previous years. On that day, the previous year, I had posted a video of me “quizzing” M on the 4 words he knew. I watched that video and realized, M had not acquired a single new word in an entire year. We just kept expecting the words to come, everyone kept saying it would happen in its own time (this is horrible advice BTW, go see an SLP the moment you have any concerns,) but was it normal for a child to show zero growth in an entire year? It didn’t feel right and that is when I told my husband, something is wrong and we need to find out what it is.

Right before his second birthday we had M evaluated at Cook Children’s for speech. They gave him a preliminary diagnosis of Childhood Apraxia of Speech. He was easily able to point to the correct object, but he would grope with his mouth or just make sounds. I went home thinking, “Ok well, I guess we are doing some speech, no biggie.” Then I made the mistake of googling what CAS is and freaked out. CAS is a neurological disconnect that prevents the brain and the mouth from working together, to put it in way simplistic terms. We immediately reached out to anyone and everyone we knew who might be able to get us a second opinion. We landed at the Miller Speech and Hearing Clinic at TCU. Miller is a wonderful place. They quickly did diagnostic testing again and said they did NOT believe he had CAS. They also thought we should do a hearing test. I’ll never forget that test. We had barely started, she’d just put this little device on the side of his head to measure the vibrations in the inner ear and nothing. The machine readout was almost totally flat. She explained that trying to teach M to talk was like trying to teach me French, while I was laying at the bottom of a bathtub full of water because his inner ear was completely full of fluid.

I actually felt joy! Something we could fix!! A real, measurable, physical problem that had an easy solution!! We were relieved. All of the sudden all of his symptoms seemed to make sense. If he couldn’t hear, he certainly couldn’t talk. If he couldn’t form certain sounds, then his muscles were underdeveloped, and that must be why he had trouble drinking from a bottle, or a cup, or enjoying certain types of foods! If his ears were full of fluid, then his equilibrium was totally off and that explained why he always looked like a baby just learning to walk, and why it took him so long to get enough stability to sit up, stand, or begin walking. We were excited. We scheduled the surgery for a few weeks later and booked two sessions a week at Miller to get him M caught up with the muscle movements in his mouth. They also suggested we try their new feeding clinic since he was such a picky eater. We were so happy to have a “fix,” and an action plan.

2 YEARS

M had tubes put in about a week before he turned 2. We were told he had a small amount of hearing loss but hopefully, it wasn’t permanent. They told us to give him 6 months and he would be talking up a storm. I had gotten so used to M being in his own little world that I honestly hadn’t thought about a time when he would talk. We loved who he was, just the way he was, and we still do. It didn’t really matter to us that he didn’t talk because he was able to get whatever he needed and he was just so precious. M has always been full of joy and expression. He gives huge smiles that show up on his whole face. His eyes get wide, his dimples pop out, and he beams. He laughs so easily and frequently, you just want to be around the light he gives. I know audible language gives a certain level of access to the world around us, but I’m confident, verbal or not, we would have continued communicating with M just fine.

That said, I always wondered what was going on inside his head. I couldn’t tell what it was, but my hunch was that it was a lot. Before I could really understand why I was doing it, I started to let M play with our iPad. He still said less than 20 words but when he used the iPad I found he could actually identify all the letters in the alphabet, upper and lower case, and connect them with the sounds they made. He was also doing puzzles, and honestly, he navigated the iPad with more fluency than I did! It was like that with anything “tech.” He knew how to use the remote, he knew our phone passcodes and codes for Amazon Prime just from watching us type them in. Our older son could be made to settle down and watch a show or play a quick game if we needed him to, but electronics were nothing more than a form of entertainment for him. M wasn’t like that. He was consuming everything he learned and putting it to memory. I would watch him and tell myself, “See? He’s super smart. I don’t have anything to worry about,” as if being smart was all he needed. And I coasted on that thought for another 2 years.

After his surgery, progress seemed slow and I was impatient. I’d had ideas of doing just 6 months or so of speech and it started to sink in that this would be a longer commitment than I’d thought. We did have a few language explosions, and that was exciting. I’ll never forget when he said he loved us, or the way he seemed to have his own little language… one he was teaching to us. He used to ask to watch “A pa deux si” with the “mon amis” I remember once at a local play space another mom asked if we were teaching him French. I had to keep from laughing because he was actually saying he wanted to watch “Despicable Me,” with the “minions.”

Two is also the age when we started to see more of his “quirks” as we called them. In almost every way he was the epitome of easy-going, but he also started to get very focused on specific activities. He would get obsessed about not just a show or an episode, but a specific scene in an episode of a show or movie. He got REALLY into Disney’s Incredibles and would only wear Incredibles pajamas, every night. I started out buying size 2T and I’m not even embarrassed to say I bought them through 5T, and we owned almost 10 pairs. At that point it still just seemed cute that he was so into something.. It was really lots of little things…. he only ate frozen waffles for breakfast with kefir, the same brand and same flavor of kefir, out of the same cup. He would (and still) eats the same thing for every meal, varying only 2 or 3 things for dinners. His pizza had to be evenly cooked with no burnt spots, in a perfect triangle. For a brief time, he would only eat the first bite of each piece because after that it wasn’t a perfect triangle anymore but we did put a stop to that. Feeding therapy taught me SO much about how to deal with his eating difficulties. I can’t say it’s broadened the foods he will eat, or even allow on the plate or the table, but it helped me tremendously because the quirks had started to become less “cute” and more difficult to understand. They started to rule our home and affect the way we parenting our other children.

3 YEARS

When M turned 3 it was increasingly difficult to explain away certain behaviors. He could literally sit on an iPad all day without ever noticing other people if we let him. Although I know parallel play is still very common at that age, he had zero interest in peers. He would sit by himself during play dates, and never talked about classmates from preschool. He didn’t respond reliably when people spoke to him, but he was still too young for it to come across as rude. He was far more focused on the adults in the room, or just looking at a random object or books. I remember he got stuck on “Cindy Circle,” a shape character in his preschool curriculum. We actually considered buying the entire curriculum to use at home because we couldn’t find a way to purchase the Cindy Circle book by itself. He started to get frustrated when he couldn’t express himself well, and that is when the fits started. Three is also the age we began to notice he had specific soothing techniques. Again, we referred to them as “quirks,” never thinking they were all related. He loved and still loves, to come up and squeeze people as hard as he can on their arms. He also would sit in the shower for up to an hour or more, just letting the water hit his back. We bought a small trampoline with a net surrounding it because he was scaring us with his reckless jumping behavior. It was like he had no idea where his body was in space. He would climb up on the counter and then sit right on the edge, with his back it, oblivious to the danger of falling backward. He fell off the bed from bouncing on it and got stitches after leaping off the couch and hitting the side table. The trampoline was a safe space for him to throw his body around without hurting himself or others. Speaking of others, he used his head like a ramming rod… everyone in the family learned to shield themselves when he came in for a hug because he truly didn’t understand he was hurting people. In fact, he didn’t notice other people’s emotions at all. Overall though, I think he charmed the heck out of everyone he came into contact with. He was a little quirky, but what’s wrong with quirky right? He was his own person but it worked for him.

4 YEARS

Things really started to change the summer before M turned 4. His vocabulary was really coming along. Yes, we still had to do some interpreting for others, but as his parents we understood him. He had taken to listening to audiobooks. It started during our long drive to summer camp for his older brother. We would listen to books during the drive but M wouldn’t leave it just for the car. He wanted to listen all the time. He would ask for the same books over and over and we were surprised to learn he could recite them from memory later in the day. By the end of that summer, he had fully memorized at least 10 books. He was asking for books to be read again and again so often that I resorted to using YouTube read-aloud because I just couldn’t sit there for 2 hours reading and rereading the same book so he could learn to recite it. This action of memorizing and repeating is an example of echolalia, which is extremely common in Autistic children especially. He was also completing 100 and 200 piece puzzles by himself. Again, I just told myself he was a smart kid who needed intellectual input. It never occurred to me that these were patterned behaviors that felt self-regulating to him.

When school started that fall of 2019, the s**t hit the fan. Up until that point, things had been working for us, and then suddenly they didn’t. My sweet, loving, quirky little boy was completely melting down at school drop-off. He would scream, grab the sides of the car door, refuse to walk, and the teachers had to carry him. I hoped it would get better but it didn’t. Eventually, I figured out if we created a pattern, a behavioral script, then everything went smoothly. On the way to school, we stopped at the same stop sign each time, and I would say “we’re almost to school, let’s get ready!” When we pulled up to drop off we would say the same back and forth, “What do you do?” “I say ‘Good morning! and I get out of the car.” “That’s right, good job buddy!” And then he would do exactly that, and it all went ok. But if I missed something…. like I didn’t hit my cue at the stop sign, it all went to hell in a handbasket. I definitely couldn’t have verbalized this at the time, but instinctively I knew that his meltdowns were not willful, or his fault in any way. It was a symptom of an unmet need, and I just didn’t understand what that need was.

Initially, I thought the drop-off fiasco was just one small hiccup to a new school year that we had fixed. But then it became a nap time concern, or a music room concern. I asked my pediatrician for a referral to The Child Study Center, because I just felt in my gut something was going on that I didn’t understand and I knew the wait could be up to a year so I wanted to go ahead and get on the list. Part of the process involved collecting feedback from the teachers. My husband went up to the school one day to pick up a form and decided to stay and watch M. He said he left in near tears because it was hard to watch, M was visibly uncomfortable. He was wandering the room, flapping his arms around, rolling on the floor, covering his ears… I know the school had made every effort to communicate his struggles with us, while still being very cognisant that he was a 4-year-old boy and 4-year-olds can be non-compliant. But we just didn’t realize it was THAT far gone. It was hard because it wasn’t “bad behavior,” it was physical and emotional discomfort, and his attempts to self-regulate. To be clear, arm flapping or rolling around is not “bad,” or inappropriate in any way, but as a parent, you know your child, and you know what’s done with enjoyment, and what’s done because they have need that is not being accommodated.

I was starting to feel desperate. I knew something was going on but I didn’t know how to get resources because.. resources for what? It felt like a mystery. About that time we had that dinner with our friends that I referred to at the beginning of the post and after that night, I saw it as clear as day and I couldn’t wait for a second longer. I turned in our paperwork for Child Study Center. I called the school district and was put on a waiting list to be put on a waiting list. That was in December, and in late January we got a call that started the process, from that point they had 45 days to complete educational testing. But educational testing isn’t medical testing. A medical diagnosis for ASD, which is what your insurance needs in order to cover treatment, must be done through a developmental pediatrician, or child psychologist. I started calling places like Jane Justin School, and Hope Center for Autism. I even called smaller schools like University Methodist, Reading Friends, and Kinderplotz, thinking maybe just the size of the school was the problem. Darien and I took tours because we wanted to be prepared, and get on the waitlist (there’s always a waitlist… we are quick learners. )

Someone and I don’t remember who suggested we call the TELOS Project. This practice came highly recommended and as we learned quickly, there are doctors you go to FOR an autism diagnosis, and doctors you go to for an exploratory evaluation. We didn’t want to pin anything on our son, we just wanted to help him thrive, so we stayed away from doctors who had a reputation to look for Autism. At TELOS, we received more detailed forms for teachers and families to fill out, at least 30 pages of forms asking for feedback. On the day of testing, we showed up early in the morning and stayed all day long, taking many breaks. M was given a series of tests, none of which I could tell you about now. We left at the end of the day and were told we would hear back in 3-6 weeks. And that was when the world shut down. March, a week after our evaluation, COVID hit the US, and we were stuck in lockdown, not knowing what was going on with our son or how to help.

Thankfully, I had taken action when that desperate feeling hit. We were so thankful we had gone and toured different schools before everything shut down. Zoom meetings had really taken off so we had our debrief with TELOS over zoom. That’s when it was confirmed that M was diagnosed with Autism Spectrum Disorder, Level 2. Autism is a spectrum, but that Level 2 diagnosis meant that M did require assistance, and more importantly, that our insurance was required to cover that assistance should we use it. (Side note: these labels are not that helpful in “real life,” and I really only accept them because we need them for insurance coverage) We called Jane Justin, the school we really felt a connection with, and let them know the diagnosis. At some point they let us know they would have a spot for M in the 20-21 school year.

I would be 100% lying to you if I said our pandemic experience was easy. It was a complete dumpster fire. We had a child newly diagnosed with ASD, no idea what that really meant, and no way to access the suggested services for the foreseeable future. We survived those six months thanks to Google and WAY too much screentime.

5 YEARS

This is where we are now. The eternal summer ended and M started JJS in August of 2020. Our whole family breathed a sigh of relief. Jane Justin School provides the structure and supports M really craves, while also keeping him intellectually stimulated and excelling academically. Children with ASD have IQs across the board. Just because someone has ASD does not mean they are intellectually disabled or intellectually gifted. For us, M does happen to have a high IQ. He exhibits some savant skills, which can be common in people with ASD. Savant differs from genius because a savant skill can be something like… knows the geographic coordinates of all major US monuments or can build a model of the White House out of toothpicks after seeing it just once in a photo. But those are not particularly useful skills, and they aren’t related to IQ. M has an amazing ability to memorize, and his visual-spacial skills are also crazy good. When M is at school, he is learning academic skills at his own pace, but he is also learning ways to self-regulate that are safe and don’t hurt others. He is learning how to recognize when he’s becoming overloaded and knows how to ask for time, and what to do in order to “center” himself again. He’s learning that although we all have certain thoughts, they are not all necessary to say out loud. He’s also learned countless other practical skills that we didn’t realize he would struggle with, such as memorizing all of his personal information so if he were to get lost he could tell someone who he is and where he lives. He knows the street is dangerous, don’t run off with strangers… skills that many children pick up simply by observing or because they intrinsically recognize it’s very important, when M may not naturally recognize those things.

As parents, we will continue to learn about Autism and how it shows up in our family. We will continue to support him in the ways he needs support to interact with others and the ways he wants support to live a happy and fulfilled life. We learned this phrase right away, “If you’ve met one autistic person, you’ve met one autistic person, that’s it.” Each autistic person is individual and there is absolutely NOTHING “wrong” with them that needs to be “fixed.” Therapies such as Speech, Occupational, or ABA exist to help our kids learn skills so they may live life to the fullest of their choosing. I can only speak for my son, but I’ll tell you as his parents, we think he is incredible, and wouldn’t for a moment consider changing anything about him.