Road to an Autism Diagnosis

Hey guys! So here it is! Our little story on how AJ got diagnosed with Autism.

Spoiler alert: we did not seek the diagnosis out; we were very much blindsided.

The Early Days

When AJ was a little thing, he was very much a chill baby. He slept through the night, relaxed most of the day and was just calm. He would have his little vocal spurts but other than that he was a quiet baby. I was a new mom, fairly young (22) and didn’t have any friends with younger babies around me, so I thought nothing of it. Man, I had a great baby!

AJ would sit with me while I did homework (I did online college courses) and then play with his little toys. I of course spoke to him, got down to his level and gave him all the loving’s. I saw no “red flags” like the doctors like to say. I will say in hindsight that maybe AJ was a little too quiet.

I couldn’t get a laugh out of him until he was three or four months old. I tried so hard to get a giggle. It wasn’t until I would label his body parts in Spanish that he would crack up. I still say that his brain is wired to a Spanish dialect or something similar. He used to watch cartoons in all types of languages except English.

Social Interactions

Like mentioned above, most of my friends didn’t have young babies around AJ’s age. Only one friend did but I wasn’t around them as much as the others since they lived a little farther. Fast forward to some game nights. We would get together at least once a week, sometimes three times a week (we lived close by) to hang out. AJ, about six months old, would be totally fine with all the chaos and kids. He loved being held and cuddled. We were very sociable as a family until AJ was about one year old.

Six Months and Up

Something that was cute to us that maybe was a sign, was AJ needing his face covered to sleep. When it came to sleep or being rocked, AJ had to have a receiver blanket laid safely over his eyes and forehead. I would do this while rocking him and then remove it when I put him in the crib. I didn’t see anything wrong with that, I myself like darkness to sleep.

One day, my friend was watching him while I went to an appointment. She said AJ wouldn’t go to sleep in his rocker without his sunglasses on. We thought it was the funniest thing. Now thinking about it, it could have been a sensory issue like light sensitivity. The way I saw it was we all have our ways to relax.

Since we are on this age and talking about sleep, I guess I will go ahead and mention that around this time is when we started seeing specialized doctors. No one knows this except for my mom and mother-in-law.

Around six and seven months old, AJ would have what looked like seizures. It was a very scary thing to go through alone. Joe was gone for work and I had no way of communicating with him. My closest friends were my support.

We had an EEG done and everything came back clean. The neurologist stated that for his age, he had more brain wave lengths than usual. I am sure I just botched that up paraphrasing but basically, his brain activity on the charts was that of a two-year-old at six/seven months old. I wrote Joe an email ecstatic that he did not have epilepsy; just very intense “trembles” according to the doctor.

Let me say that the trembles were so intense our PCM and I really believed they were seizures. Thankfully, he doesn’t have them anymore.

Why keep it a secret? Well, it wasn’t anyone’s business and I did not need eyes on my child. Younger Suhay was very private about any health concerns because of the fear of judgment. I was alone, a young mom, and I didn’t need people telling me what they thought I needed to do. That was my mentality.

Fast forward some and let’s talk about Houston.  When AJ was ten months old, we took a long road trip to see our family in Houston, TX. It was the first time everyone would be meeting AJ and man did he get all the attention! He did so good that trip and had no issues spending time with loved ones he didn’t know or new places.

He was still the quiet little man who enjoyed cuddles. I can only recall a few hard moments. I don’t remember exactly what happened, but I was crying in my room at my mom’s house. I overheard my mom tell my brothers to give me space because I was stressed out that something was upsetting AJ and I couldn’t settle him down.

To be fair, AJ was recovering from pneumonia and the medication he was on gave him a bad diaper rash. Not to mention our drive home took thirty-six hours. I would say my break down was justified lol.

1 Year Old and 15 Months Well Check

LET’S TALK ABOUT ONE!

This is the age everything for us went full speed down the rabbit hole. By this time, my close friends had moved away so it was just me and AJ. Joe was at work a lot, so the poor guy only had his mom and pup most of the time. He still wasn’t vocal, and I honestly didn’t have concerns at the time. I always heard that boys tended to speak later, and the kid had no little friends to learn from. Yeah, he had me but that is not the same.

Anyway, this was when some serious changes started to happen. I only say this with hindsight vision of course.

The biggest one would be the regression in eating. We always joke that the cake did it. I was very strict with AJ and his diet when he was growing up. No candy, sweets, juice, nothing. His cake smash was the first taste of sweet dessert. Literally that evening he started pushing away veggies at dinner. He continued to eat fruits and such until one and a half.

Until this day, he has a limited diet that I fight.

Around this time, we weren’t really socializing with other families. Our main ones left, Joe was swamped with work and I with school. I didn’t see any regression in socializing until after the pcm brought it up (15months).

Fifteen Months Checkup.

You know those surveys they make you fill out each wellness visit? I hate those. This visit was on the tail end of his fifteenth month because his original pcm moved. We got a doctor I didn’t know but he was nice.

This nice man became the first person to ever say the word Autism to me.

When I got to the last page of the survey there was a box for concerns. Joe and I had been talking about AJ’s vision. He had a ball pit at home that he LOVED. He would toss all the balls out and then sit in the middle of the floor to mainly play with the red balls.

Somehow, we noticed this and thought hmm, maybe he’s color blind? Is red related to colorblindness? No clue. At the time, we thought maybe red was very distinct so if he was, then he sees that color the most? I am sure all of this is wrong, but this was the thinking behind Joe and Suhay at the time.

The nice doctor goes “Hmm concerned with his vision, tell me about it.” So, I told him what I just told y’all.

Nice doctor: “Hmm, I see he isn’t talking much, are y’all concerned about that?”

Younger Suhay getting defensive: “Well he doesn’t have kids around him; I figured that’s why he’s behind.”

Nice Doctor: “Does he know his name? Can you say it so I can see what he does?”

Young Suhay extremely defensive: “Of course he does! AJ, Alexander, Hey bud.”

Doctor (no longer the nice man in my eyes): “Hmm, he didn’t seem to look up, is that normal?”

Suhay: “Sometimes he is just really into what toy he is playing with, right now he is into the white paper on the exam table.”

Doctor: “Okay, Alexander looks great health wise but I have some other concerns.”

*Que lump in my throat*

Doctor: “I don’t want you to think anything of it because I am not a developmental pediatrician, but I think it would be best to get little Alexander screened for Autism. I am not saying that he has it, but I want to be on the safe side and get him evaluated as early as possible, just in case.”

Suhay all watery eyed: “Yeah, sure. I will call the number to set it up. Thank you.” Exits the room as fast as possible.

Poor Joe was trying so hard to check on me. He was there with us but was hands on with AJ while I did all the talking. I was walking so fast to the car that he didn’t get a word in until we were all buckled up. I remember him lifting my chin and saying “Hey, it’s okay.” Me being me, I shrugged it off and insisted that everything was fine. “This doctor doesn’t know my son,” I said. I was hurt, pissed off, and offended that anyone would think something is “wrong” with my baby.

Joe being Joe, he tried to mellow me out. I was HOT! He was like “Look, you are with AJ more than me, you know him. He is perfect, nothing will change that. If you aren’t worried, I’m not worried. We will just call the developmental pediatrician to at least get him some speech therapy.”

I agreed.

Developmental Observation(s)

Dr. C we shall call her. Man, this doctor takes the cake for the worst bedside manner. I have heard other stories that were worse than ours when it comes to this doctor. If you are wondering how they still have business, it’s because they are the only in network developmental pediatrician in that area.  

So, lets dive in and sum up the two thirty-minute sessions she had with AJ. The initial observation was in this tiny room. AJ wasn’t having it. No bad behaviors or anything, just not excited to play with the toys or be on the floor with this stranger he just met.

This doctor didn’t want me intervening during the play observation. In my mind I was like “ummm you are a stranger; he’s not going to play with you!”

By the end of the thirty minutes, she flat out told me he was Autistic. She said he didn’t respond to his name or nickname, wasn’t interested in turn taking or pretend play. I was defensive. She was cold. I felt like I needed to defend my son.

I told her he was only sixteen months old and this was the first time being in that environment. All the toys and “tests” presented have never been introduced to AJ before this appointment. Like taking a baby doll a bath. I never did that with AJ at home so of course he didn’t know what to do. Blowing out candles on a makeshift birthday cake? Nope, never played like that either.

She was disgusted with my responses and upset with my push back. She also told/asked me “So what do y’all do all day then?”

Man, I wanted to punch her. I know violence is not the answer, but this lady was straight disrespectful with her tone and delivery of her thoughts. Keep in mind, I didn’t even want to do the observation and had my guard up after the fifteen-month checkup.

Talk about feeling belittled as a first-time mother who was basically parenting alone half the year. I was trying my best. My son was happy and healthy. I thought I was doing the best I could. I left that appointment feeling like a failure.

Why haven’t I thought of pretend play games to do at home?

Why did I let him watch TV with me?

Why don’t I know about all these common things he should be doing?

No surprise that I broke down in the car. I was defeated. Why couldn’t these doctors see how perfect my son was? Why do they keep telling me something is wrong!?

I know Autism doesn’t mean something is wrong with your loved one, but at the very beginning stages like these appointments, they were feeding me these fears and struggles that my kid would possibly endure for the rest of his life. Tone and delivery set the stage for new parents!

The first doctor (Mr. Nice) did no wrong. He was caring and sweet, but I was just a defensive mom. Dr. C however was cold and demeaning. I genuinely believe that her way of communicating made me reject any thoughts she had as a doctor regarding my child. Why would I want to believe this cold woman?

At the end of the appointment I told her I refused to sign any paperwork accepting a diagnosis. I wanted AJ to have a chance to grow and develop new skills.  “Give my boy a chance before diagnosing him after thirty minutes,” I told her.

I kid you not this is what she said to me: “It would be a shame if he fell more behind because you are in denial.”

I told her it wasn’t happening that day. My son deserves time to grow and learn.

She gave us four months before the next evaluation.

I went home fuming and crying. Joe was shocked when I told him about my experience. I told him I didn’t care who I had to b*%#h out at his job, he will be at the second appointment.

Four Months Gap & Second Observation/Diagnosis Day

Four months had passed, and AJ was twenty months old. Just four months shy of hitting two. During the four months break I tried everything. I tried play dates – fail, play groups – fail. The meltdowns were now full blown. When we tried being social by having friends over like when AJ was little, he would head bang and scream.

It is like everything I tried to “work on” to prove this lady wrong, proved her right.

AJ didn’t have behaviors before this. I know now it’s because I never pushed him socially to see his limits. That is why I didn’t see any of the “red flags” they were shoving down my throat. We were comfortable and AJ ran the house. That is what I learned during those four months.

The second observation had rolled around, and I will never forget, it was “Back to the Future Day.” It was all over Facebook. My friends posting memes and cracking jokes, while I was dreading the day.

The appointment went way better demeanor wise and I was pretty annoyed by that. I HATE when people act differently because a man is around but belittle the woman when she is alone. That’s what happened. She (Dr. C) carried herself completely different with Joe there and mainly made eye contact with him, basically dismissive to me being there.

At the end of the appointment we were handed the diagnosis along with instructions on getting AJ into therapies. It was a lot for me that day. I left feeling like I lost the battle for my son. I failed to prove that he was more than what they saw. I was defeated emotionally. I even remember fighting myself to stop looking at AJ differently when we got home.  

I will go into detail about all those raw emotions in another blog and answer some poll questions like I had promised. I wanted to do it on this blog but let’s be honest, she’s a pretty heavy read.

I want to encourage everyone to love, accept and advocate for your loved ones. They are indeed MORE THAN any word on a piece of paper. You may have to go through a thought/healing process to realize that like I did or be like Joe and not phased by any of it.

Your journey is not wrong! Read that again!

If you are in the thick of it, know that you always have an ear from me.

Until next blog friends ❤

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