I haven’t posted anything during “Autism Awareness Month” for a variety of reasons. But for the past few days a little voice in my head has been saying “Just share your story. You don’t have to engage in debates if you don’t want to… Just share it, as is.” So here it is. Maybe someone will glean something from it, or feel less alone.
William was my first baby to be born (I had lost one at the beginning of the second trimester, before him). His birth was normal, his Apgars were 9 and 10, and the first thing he did when they gave him to me was grab my finger, look deep into my eyes, and scream. I know the “experts” say that they can’t see anything at first, but you know how someone looks into your soul, versus looking through you? You just feel that recognition. He gazed right at me and he knew his mother. And throughout the first few weeks it felt like he did everything “early”. He smiled early, laughed early, was holding his head up and was super alert.
I remember when he was about 2 months old, first feeling like he was “different”. But this being my first experience with a baby, I couldn’t say what it was. It just seemed like his awareness was unusual. My mom came to visit and kept saying, “He won’t look at me” and I shrugged it off. I didn’t have any experience with babies otherwise so I didn’t know what she meant. She mentioned it again when she visited a couple months later.
Gradually I began to see it. Whereas he had once made a lot of eye contact and did the typical back-and-forth smiling and laughing that young babies do, it wasn’t very often anymore. He was still a happy baby, but “in his own world” happy.
I kept waiting for him to babble and coo, but he never did. Other than crying when he was hungry, or laughter (he would laugh at objects doing funny things, but not people), he never made sounds. I shrugged it off til he was about 10 months old and still had never attempted any kind of baby talk. I suspected autism very strongly at 12 months, brought it up to our pediatrician at each visit, and was dismissed each time. William would have qualified for early intervention services, but it was another full year before the doctor finally relented and gave me the referral I begged from him. When I said the A word he’d act put out, like “moms these days, they all think their children have autism”.
I started to notice his rituals around that age. When I let him eat french fries, he would line them up in a row. Then he’d pick one up, move it to the side, and bat at it to make it spin. He’d then place it back in the line for a moment, and then pick it up and eat it. Each fry was eaten this way, one after another.
He had rituals for everything. Most of the time toys were taken to a hard floor and he’d spin them, but not play with them in any other way. Lining up things was his main pastime. DVDs, cans of food, couch cushions, whatever. We knew William had been around because we’d walk into a room and everything was all lined up.
As a toddler, he stopped sleeping. He’d wander the house all night, moaning and acting oddly. One morning we woke up to the same drawing, performed hundreds of times, covering every square inch of the kitchen floor.
He began having this sour-smelling diarrhea, multiple times per day, every day, for I don’t know how long. A year or more? We told the doctor and he kept brushing off our concerns with “toddlers poop a lot”. It was so bad that our poor baby had chronic, bleeding diaper rash. The doctor said to use diaper rash cream.
I noticed that despite his lack of speaking and “odd” behavior, he seemed uncommonly intelligent. At playgrounds he would ignore the other kids and perform “experiments”. He’d gather objects of various sizes and weights, and send them down the slide, putting his eyes level with the slide and watching very carefully, as if timing everything in his head and taking notes.
Many months before he turned two years old, he knew things like the alphabet. I could mix up a pack of ABC flash cards, and give them to him. He’d get to work, scrambling like mad to line them up in order across the floor. Same with numbers… And his favorite obsession was arranging things by color. Somehow he understood the color spectrum (red, orange, yellow, green, and so on) without having been taught. I guess he saw a rainbow somewhere and liked it.
One night my mom babysat him, and he kept dragging her by the hand to the TV. She didn’t know what he wanted. She flipped through the satellite channels as his frustration grew. Then she said he took a break, staring at her, and she could see the gears turning in his head. He took her by the hand, led her to a Teletubbies poster on the wall of his room, and made her tap it. Then he took her back to the living room and tapped her hand on the TV. She made the connection. He was telling her that he wanted to watch Teletubbies.
He couldn’t speak a word by three, and still did not babble or otherwise make noises with his mouth. However, I began to suspect that he was reading. This was confirmed one day when I was cooking supper, and he kept pulling on my hand, trying to take me to the closed pantry. I told him to wait and he got impatient. The next time he tugged on my hand, I looked down to see that he had used wooden puzzle letters to spell out “OPEN” in front of the closed door. He had barely turned three years old… and he was writing me notes.
He carried those puzzle letters around like they were his lifeline, which in a way they were. “MORE”, he’d spell. “CHIPS”. It grew more complex. “CRACKER”. “COOKIE”. “CHICKEN”.
One day I walked into William’s room to check on him, because when you have an unusually quiet child you get paranoid. I found him covered in blood. His door, and part of one wall, were adorned with blood smears and his little caveman drawings.. With blood as the medium. I examined him and found that he’d cut his finger, and he was purposely squeezing it to make more of the pretty red paint. Luckily, he was fine, but it was yet another reminder of how careful I needed to be. Kids with autism often don’t seem to feel pain, or know that they need to tell you when they’re injured.
He was pretty delayed with potty training, because I didn’t know how to teach him. Around his fourth birthday I gave him a book on exactly what to do in the bathroom. About this time he had started making “humming” noises when he’d read books (oh yes, he was reading entire books at this point). It just sounded like “Mmmp mm mmmmp mm mm mmmp mmmmm”. But if you followed along with the book, you could hear the cadence of what he was reading.
So anyway, I gave him that book, and he’d go into the bathroom, and I’d hear ‘Mmmmp mm mmm mmm mmmmmmp mm mm mmmmp”. Then the flush. He potty trained himself by reading about it, in a matter of two or three days.
Soon after (around his fourth birthday) he began saying his first words. “More” was first, because it was one of the main sign language signs he had learned in speech therapy. He used “more” for pretty much everything for a long time. It kind of universally meant, ‘I want something! Now guess what it is!” Gradually he learned more single words, and by the time he was about seven he could form short sentences.
Switching gears here (more about William later), Cameron was born when William was 20 months old. So, they were less than 2 years apart.
While all of this was going on with William, I had a very different baby on my hands. Cameron was also healthy at birth, and came home quite healthy. He was a content, happy newborn for the first few weeks.
But then the problems started around two months. He shrieked, a high-pitched, agonized scream, arching his back and pushing away from me… hours upon hours of the day. In between these pain cries, he’d projectile vomit everything he’d eaten. Multiple times every single day, he’d spray me down with sour milk - not a little spit-up, but like someone dumped a cup of rotten milk on me. I’d clean up and it would happen again, and again, and again.
This would happen for a few weeks, and he’d start to settle down. But I would mention it to our pediatrician at the next visit anyway. The doctor informed me that all babies “spit up” and “cry a lot”, and kind of chuckled at me for being worrywart. I left every visit angry that this damn man wouldn’t listen to me. A mother knows a pain cry when she hears it, and exclusively breastfed babies should NOT suffer severe digestive distress. But I was so exhausted from lack of sleep, that I couldn’t really advocate for my son, or myself.
I noticed another pattern, too. His problems would seem to improve quite a bit before a check-up, which is another reason I didn’t push the issue too hard. I would feel aggravated that the doctor didn’t take me seriously, but then think “well he’s seemed a lot better lately anyway”. But immediately after these appointments, things would flare up again, horribly. Each time, I mentally kicked myself for not making more of a fuss.
Finally I took my husband with me to an appointment, because I was sick of the doctor dismissing me as a “worrywart mother”. My husband was able to convince the doctor that something was wrong, so without any testing he diagnosed Cameron with “reflux” and prescribed a medication.
The medicine didn’t work at all. And, as usual, things got much worse immediately after that checkup. We talked, and we both felt angry, frustrated, and disillusioned. We stopped taking Cameron in for checkups. He was 6 months old.
All of this time, we were also dealing with mounting suspicion that William had autism. We were handling a lot, so no, we didn’t run to specialists or seek second and third opinions.
After that six month checkup was when another problem started. He would sometimes go a week without pooping, and become constipated and miserable. Finally, with much straining, screaming, and yes, bleeding, he would pass these rock-like stools. Again…. He was exclusively, 100 percent breastfed. I knew this was not right. This should never happen with breastfed babies.
By about 9 months, the projectile vomiting, screaming in pain, and constipation were clearing up. It was as if I’d endured a storm of noise, puke, and shit… and when the clouds cleared, there was this happy little baby boy smiling at me. When his health issues faded, I finally had a child with whom I could connect. He walked at 10 months and began babbling. Soon he was pulling me to the door, squealing “Go go go!” because he wanted to go out somewhere. He could say “Mama, Dada, ball” and a few other words by 12 months. He made eye contact, smiled at us, and turned into a total lovebug. I got pregnant with Stella when Cameron was a year old.
Meanwhile, of course, everything was going on with William. We finally got that referral for early intervention services, and after jumping through the hoops he got his autism evaluation by a specialist group in Birmingham. AL. The diagnosis came back loud and clear: “Severe and profound autism”. His developmental testing came back somewhere around the severely mentally retarded range, which completely contradicted everything I knew about my son. But I also knew that testing relies heavily upon very heavily upon verbal abilities. You can’t answer a question, or perform a task, if you don’t “hear” what the other person has asked you to do.
We learned of a special preschool, created just for children with autism, at the University of Alabama. I wanted my son in that program. So we jumped through some more hoops to get him in, and the day before he was to start (his third birthday) they informed us he had to get a checkup from the doctor and supply his vaccination forms.
We hadn’t taken either boy to the pediatrician since we quit when Cameron was six months old. But now we faced a choice: We were told William couldn’t attend this school, that I believed would help him, unless we jumped through this final hoop.
So, we took our silent William, and our babbling 18-month-old Cameron, in for a check-up. We were assigned a different doctor, and I was glad not to confront the jerk who had made me feel so small only a year ago. I didn’t receive judgement for failing to attend checkups. She was nice, and encouraging, and updated William’s vaccinations so he could attend preschool.
Then she said, “Since you’re here anyway, why don’t we get Cameron caught up?” She reminded me that with William attending preschool now, both boys would be more exposed to illness. So we did that. Cameron received all of the shots he had missed during the previous year.
William started school the next day. Maybe some parents wouldn’t start their kid at a preschool on their birthday. But I was so desperate for help, that I didn’t want him to miss a single day of the intensive therapies offered by this program. For the next week or so, I concentrated on helping him adjust to his new routine. He wasn’t thrilled. I was also six months pregnant with Stella at this time.
It took me several days to realize that Cameron seemed different. He had been cranky, he was running a slight fever (which we were told was normal), and he wasn’t his usual outgoing self. I thought he’d picked up a little cold, maybe from going with me to the preschool, so I wasn’t overly concerned.
But he didn’t get better. Now he was shrieking all the time, like before. Like when he was a little baby. He wouldn’t look at me. He began walking on his toes, and when I say “toes” I don’t mean tip-toeing. I mean his toes were curled underneath him and he walked on them like that, precariously half-levitating around the house. I honestly don’t understand the physics behind it, it was so bizarre and painful-looking. He flapped his hands, screamed, looked into the distance, and hobbled around on his toes. And I realized he hadn’t spoken all this time. His normal vocabulary had vanished completely.
I watched all of this with a sinking feeling... and I admit I did nothing. Because I had read this story over and over, while doing my research on autism. William just…. Had autism. As far as I knew, he had just always been autistic. Now I was seeing sudden, severe, “regressive autism” right in front of me. I’d read that it was worse. I froze, like I was watching a freight train bearing down on me. I knew, but I wouldn’t admit it. I saw it, but tried to convince myself I was wrong.
A month went by and Cameron hadn’t said a single word. Then, one day we were riding in our new minivan, taking the boys on a trip to see their grandparents. And from the backseat, a little voice:
“A! Ah, ah, apple. B! Buh, buh, ball. C! Cuh cuh, cat. D! Duh, duh, dog.” Cameron (19 months old) recited the entire alphabet flawlessly, imitating the vocal inflections of an video we owned.
William, no doubt, found this performance fascinating, given his love of the alphabet. But I felt as though a bucket of ice water had been dumped on me. Chills trickled down my spine, and I was speechless for a long moment. Then, finally, I turned to my husband and said, “He has it too”.
“I know. I’ve been noticing… things…”
“Yeah”.
The rest of that four hour ride was spent in silence.
When we returned from our trip, my feverish research began anew. I had to learn about regressive autism now. I was also now seven months pregnant. I wanted, needed, to know the odds of our third child having autism.
One in three, as it turns out. If you already have two children with autism, the odds of any subsequent children also having it are one in three. Now I regarded my swelling stomach as a ticking time bomb. I knew the baby was a girl, so that helped her chances a bit.
It was around this time that Cameron began exhibiting night terrors. Since he was about 10 months old, he had happily trotted off to bed, clutching his big blue Carebear and plush blanket, and put himself to sleep at promptly at 9:00 each night. He was the easiest, most cheerful child to put to bed. And he still was.
But about an hour after drifting off to sleep in his toddler bed, Cameron would walk into the living room, screaming frantically, eyes looking into nothingness, bumping into walls… We would talk to him, try to console him, but he looked through us. He couldn’t see us or hear us.
This time, at least the doctor provided an actual, accurate diagnosis. Night terrors. We learned that we shouldn’t interfere, because that can make it worse, and just to watch him and keep him safe. It became our nightly ritual, and around 10:00 we would even joke, “it’s almost time for the exorcism to begin”.
Also, at that appointment, we received a referral for early intervention services. This time I was much more assertive. Now, with William happily adjusted to his special preschool, we began the process all over again with his little brother. Paper work was done, hoops were jumped through, and at age two and half he received the same diagnosis: “Severe and profound autism”. When Cameron turned three he joined William at the preschool.
While all of this was happening, Stella had arrived in the world. Another perfect, healthy newborn.
Around two months, she began to exhibit the same problems Cameron had endured. The banshee wail began, she arched her back, she pulled away from me, she projectile vomited. Again the doctor said “babies do this” and dismissed me. We went back for her four month checkup and noticed, as with Cameron, that her problems worsened afterward.
“You know,” I said to their dad. “This is gonna sound crazy but it’s almost like taking them to the doctor makes them….. Worse somehow”. I laughed nervously, because I knew that sounded crazy, right? Doctors know best and all.
“I’ve actually been thinking that too”.
That day we both said “fuck it”. We didn’t take Stella back to the doctor for any more check-ups, not for a long time. We were exhausted, frustrated, confused… We didn’t know what was going on, but we knew things seemed to get better when we didn’t seek “help”.
Soon the digestive problems cleared up, and by six months or so, I had a fat, happy baby girl. Or, perhaps I should say “content”. Unlike Cameron, she didn’t have what you’d call a sunny disposition. She never smiled or laughed, and in fact amused us by glaring at new objects and people with what appeared to be intense skepticism. However, she rarely cried, and liked to sit on the floor and flip through books. She was content, if somewhat withdrawn and quiet.
Pretty soon I began to feel as though I were watching William’s development all over again. Stella never babbled. She preferred to be left alone to do her own thing. She didn’t seem all that interested in bonding with me. She was aloof. But, she was physically healthy, and being an introvert myself I didn’t feel too concerned.
She reached one year old and still hadn’t made a single noise with her mouth, other than crying. She had laughed maybe twice in her life, serious as she was. She lined up her toys in rows. She would spin things. She didn’t engage in pretend play, or pay attention when someone tried to engage with her. She was in her own little world, with her rows of toys. In the car, she screamed bloody murder if sunlight touched any part of her, and she wouldn’t tolerate anything on her feet.
I walked into her room to check on her one day, and she was sitting in the floor, smiling… smearing blood all over a picture of herself. She had climbed the wall, removed a frame, and broke it. She was super happy about all the pretty red paint. My mind flashed back to the incident with William. After that, I began to notice that Stella didn’t feel pain, or feel any need to communicate with me when something was wrong.
Finally she began to say a few words by about 15 months, and quickly learned more. Just as I began to feel super worried, it was like I watched her brain rewire right before my eyes. Everything about her behavior changed over just a few months, as if a fog was lifted. But she definitely still played oddly with her toys, lining them up in rows, and exhibited signs of sensory problems.
When Stella was 18 months old, I took her to the zoo. “Look at the little monkey,” I told her. She fired back with precise enunciation, “It’s a pygmy marmoset”. Well, alright then. She seemed a bit disgusted at my stupidity!
Over time I began to breathe a sigh of relief, because my baby girl didn’t seem to have the same problems as her brothers. Or, rather, she did… But I watched her... grow out of them?
Leftover autistic features made me wonder if maybe she had Aspergers, but I didn’t rush to have her evaluated. In fact, I was so sick of doctors and professionals that we just stayed away from them entirely. I watched and waited. Later, when she was 8, she was diagnosed with ADHD after a particularly rough year in school. Today she struggles with a few things, like certain types of math, and empathy for others. It’s not that she doesn’t have empathy, but that she can’t imagine why things that don’t bother her, would perhaps bother someone else. She utterly flunked the theory of mind test when I performed it on her. But if you met her today, you would think she’s a pretty normal 12 year old girl.
A few years ago, I received a notice from the school. William needed a tDap booster to start sixth grade, and we were late. He wouldn’t be allowed to come back to school unless we got the shot that afternoon. I was forced into a quick decision. He loved school, and had progressed so much over the years. In fact, I credited school with much of his success. He was mainstreamed in his class, he was speaking in sentences, and he was becoming observant of other people and their emotions.
I had wondered, over the years, if vaccines had anything to do with our situation. I’d heard the rumors, of course. I had also read the vehement denials, by the medical and scientific communities. In particular I had read that “anti vaxxers” were morons, who just needed something to blame for their genetic problems. If you even question vaccines these days, you are ridiculed mercilessly.
I also knew what I had seen, and it was eating at me. But I had finally reconciled my feelings, by deciding that if vaccines had anything at all to do with autism, it was because babies have undeveloped immune systems and doctors were giving too many shots at once. Or, their brains were still developing, and any little thing could potentially disrupt that.
But now my son was almost 12 years old. He had a normally functioning immune system, and I had watched his brain heal and develop beyond whatever was “wrong” with it when he was younger. He had made so much progress. And I had never heard allegations of vaccines causing a bad reaction in an older child, other than the usual fever or pain at the injection site.
I didn’t want him to miss school, and I didn’t know about exemptions, so I took William to the doctor and we got the booster shot.
He stopped speaking. At nearly twelve years old, he lost every single word in his vocabulary, except for “hungry” and “bathroom”, and he had to work hard, gears turning behind his eyes, grunting and struggling just to churn out those single words on occasion.
I watched in the days following, as he descended into confusion. It was like watching someone’s brain get scrambled in a blender. Where he was normally orderly and precise, he was suddenly chaotic and unpredictable. His sweet, calm disposition disappeared and was replaced with bursts of rage or grief. He cried… and cried… and cried. He began banging his head against the walls at school - something he had never done. He screamed without words. I looked in his eyes every day, and he was lost.
I can’t imagine what it felt like, to have all of the abilities he had worked so hard to gain, snatched away overnight. I was overcome with grief and guilt.
Gradually, over the next six months or so, William’s determined, positive nature returned. He stopped screaming, crying, and banging his head, and seemed to refocus himself. He would approach me and attempt to speak, and I could see him searching his brain for the words. He clumsily moved his lips, stuttering, starting and stopping and restarting… it would take a minute, maybe two, but he would stammer out a word. Then two words. Over time, short sentences emerged again.
It was like watching his early years all over again, but this time it was faster.
He’s sixteen now, and I would say he has mostly recovered what he lost that day. That day. It did happen in a day, in a moment even, as abruptly as turning off a light.
His adolescent regression happened at the same time I discovered a pregnancy. I have made different choices with my fourth child, Kaeleigh. And she has escaped those one-in-three odds.