Hearing the word “Autism” for the first time.

Mom son autism diagnosisWhat a traumatic day that was for me. Autism. What was this? I didn’t really know much about it, but it didn’t sound good.

We had been keeping our speech therapy sessions religiously, never missing one. I was on a mission to teach my little boy how to talk. Taylor’s words were coming one by one and my list on the refrigerator was finally beginning to grow but he was still unable to come up with his own sentences.

What I mean by this is that Taylor was learning how to talk by putting full phrases together, not words. An example would be how he always used the phrase, “Can I have more, _________” and then would insert whatever word would work.

He would talk with his videos and his words were becoming more and more clear. People could understand what he was saying a little more easily now. Jungle Book and Mary Poppins were his favorite videos and he would watch them over and over again.

(Here is a sweet video of Taylor dancing to Mary Poppins. I swear I could understand every word he said.)

One night, Taylor amazed and entertained Mike and I for almost two hours as he stood on our bed and recited word for word, the entire movie of the Jungle Book, complete with the voice inflections. He was two and a half. Thinking back I realize he probably grunted most of the words but we knew what he was saying and Taylor knew what he was saying. We loved every moment of this impromptu play but it did get me thinking. The speech therapy seemed to be working, but something still wasn’t right.

The next time I saw his speech therapist, I told her what was bothering me. I asked her, “Why can Taylor recite an entire hour and a half long video to me, can say phrases that you are teaching him, but still cannot make his own sentences? Why can he say the words, ‘outside’ and ‘I’ and ‘Go’ and ‘Want’ but cannot figure out how to put these words together on his own to say ‘I want to go outside?’”

His speech therapist looked at me and I could tell she was flustered. She knew something was up but wasn’t saying anything. I could see it in her eyes. Instead she said, “Let me see if I can get our child psychologist out here to see Taylor.” She wouldn’t tell me why, just that she wanted to rule some things out first.

I wasn’t ready for what I was about to hear. I will let you know that right now. Honestly, I don’t think there is any way I could have been prepared for what was to follow.

The psychologist came out to our home the next week. She spent about thirty minutes observing Taylor, playing with him and asking us questions. To Mike and I, they seemed like very strange questions and we couldn’t figure out how they related to Taylor’s speech.

Most parents today would understand immediately why these questions were being asked, but Mike and I were clueless.

Doctor- “Does Taylor have a high tolerance for pain?”

Me– “Well, last week he stuck his finger in hot candle wax at a birthday party and didn’t even cry. Does that count?”

I remember answering this question in particular because Taylor had just done this the week before. I had grabbed him immediately and ran him to the bathroom to run cold water on hand, worried he had blistered his finger. Thankfully there were no blisters and there was no crying either.  It didn’t seem to phase him at all. 

As I answered this question, as if on cue, Taylor dropped a VHS tape on his big toe. He immediately grabbed his toe, hopped around dramatically and started crying. Then he hopped over to Mike so daddy could kiss his toe and make it better. THIS IS IMPORTANT TO REMEMBER!

Doctor continues…– “Does Taylor like textures?”

Me-“Um, I guess so. He loves getting the fall leaves in his hands and crunching them next to his ear so he can hear the sounds.”

Doctor – “Does he have a sensitive gag reflex?”

Me- “Yes. Very sensitive.”

Doctor– “Is he affectionate?”

I looked at her for a long minute before answering. Really? While she has been asking us these questions, Taylor has been jumping off the couch into her arms for her to catch him. He has also been pulling on her bag because he thinks she is there for a “play time”. He is totally aware this woman is standing in our living room and he wants her undivided attention because he wants to get rewards like he does when his speech therapist comes. Just a moment before he was in his daddy’s lap getting “boo boo love”. 

Me-I pointedly look at Taylor as he jumps off the arm of the couch and into her arms, “Well, yes…obviously he loves people! He never seems to meet a stranger. He loves kisses and hugs, tickles and cuddling with Mommy and Daddy. Don’t you Taylor?”

Mike and I still had NO IDEA what this doctor was looking for. We thought she was going to tell us why he wasn’t talking. I was ready for her to give me drills for him and tell me that he just needs a few more hours of speech each week. That didn’t happen. At the end of the 30 minute “interview”, her hand on the door to leave, she mentions the word “autism” as a possible diagnose. Then she walked out the door, telling us to expect her report within the week.

We are stunned. Autism? 

I couldn’t breath. I felt like the floor had been ripped out from under my feet. I just sank into the couch trying to process what she had just said. Autism?! Taylor? What did this mean? The only thing I knew about autism was from Dustin Hoffman’s character in the movie Rain Man and I knew that Taylor was nothing like that! Not even a little bit!

I was a mess. While part of me felt a sense of relief that I wasn’t going crazy another part of me was devastated. That doctor had to be wrong. She had to be! But, but what if she wasn’t? 

A week later, we received her report in the mail. As I began to read it, I stopped and looked again at who it was addressed to. Did I get someone else’s report? In this report the doctor wrote things like: ‘the parents have noticed high tolerances for pain’, and ‘the child is non-affectionate’, ‘child appears to be severely delayed in speech’ and ‘indifferent to my attention and appears to be socially delayed’. It continued on, concluding by giving a possible diagnose of severe autism. This report also suggested that there was a high possibility that Taylor would need to be placed in a special institution in the years to come.

WHAT…THE…HELL?

I have never been so infuriated in my entire life! I honestly believe this woman should lose her license! I mean, had she even been paying attention to Taylor?! Apparently no, she had not. She spent no longer than 30 minutes with my child and from that brief amount of time with him she felt she could mail us a full diagnosis? Really? Angry, hot tears made it hard to continue reading but I did read it. I read it all and didn’t even recognize the child she wrote that report on. It certainly was NOT on the little boy who had spent the entire time she was with him, pulling on her trying to get her attention. This report could not possibly be about the same child that was crying because he hurt his toe while she stood there watching! She didn’t even quote us correctly in the report and some of the quotes we didn’t say at  all!

Did she make all of this up? Did she just have a terrible memory? What was this crap? I was furious! I called my husband and tried to read him the report through angry sobs. He honestly thought we had gotten someone else’s report. He even asked me to double check the envelope. I was absolutely beside myself, almost hysterical! Okay, fine. I was hysterical!

Whenever I think back on all of this, I always wonder to myself, “what if we had believed her?” It’s chilling to think about really. What if we had just taken her diagnosis and recommendation as final word? She had recommended that we put Taylor in an institution. To this day, I still get so upset thinking about that. I mean, she only spent thirty minutes total with him. Half an hour. Unbelievable.

We didn’t take her word though. My husband and I both knew it wasn’t right. I knew my son and my son was not the person described in that report.

Believe your heart and trust your instinct. Don’t just get one opinion, keep searching. If you don’t like what one doctor says, ask another, and another and another. Most importantly, find a doctor that honestly cares about the well being of your child. Do your own research and ask ALL the questions! 

That’s what Mike and I did. We looked up everything we could find on autism. We had Taylor evaluated and tested by other professionals. Some tests he passed, some he didn’t. We read every single thing we could find on autism. We learned what was just snake oil remedies and what was real. What about his diet? Could it be environmental? What about social therapy groups? Read, read, read. Research, research, research! That became our world.

If there was a positive that came out of this experience it would be that it motivated me. That awful report lit a fire under me to prove this woman was wrong about Taylor. I also had something solid I could research and had a name for it. AUTISM.

Taylor is 22 years old now. He graduated high school when he was eighteen with a standard diploma. The following year, he attended an inclusion job program called Project Search. After graduating that program a year later he began working as a nursing assistant in the ER at our local hospital. He started driving about two years ago. Taylor has a black belt in Taekwando, loves babies and can tell you anything you ever want to know about dogs, tarantulas and movies.

We did prove that doctor wrong. Wait, no we didn’t. Taylor did!

Hearing the word Autism
Taylor with his baby cousin, Dash.
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