E’s Autism Story

E was diagnosed with Autism back in April. It was nice to finally have answers. There were a lot of random behaviors that we were concerned about for awhile. The tricky thing about Autism is that there is not a physical test that can be done such as blood work. You have to rely on the expertise of the doctor that they they know what they are talking about, or the efficiency of the test that they administer, that it is a proper diagnosis. Because of this, you get a lot of people that doubt your child’s diagnosis.
We were confidant with it. We saw 2 professionals leading up to even being referred to the developmental pediatrician that we saw. The developmental pediatrician that we saw is a leader in the field, and has been working with Autistic children for 40 years.
Still, a lot of people were surprised hearing E had Autism. I think people tend to believe it is often over diagnosed. If the child isn’t displaying the stereotypical autism symptoms that they know about then they say, “Oh he doesn’t seem like he is autistic” or “you have it pretty easy with him” These comments can be hurtful, but I am learning to brush them off. E has good days and bad days. Some days, to the outsider, you might not be able to tell he has Autism but that doesn’t mean it’s not there and that doesn’t mean it is not difficult for me. I understand that people do have it harder than me, but that doesn’t take away my difficulty.
I know these comments are not ill-intentioned. I think Autism is often misrepresented. People think: Hand flapping, echolalia, tantrums, no smiling, no eye contact ever, and savant.
I thought it might be helpful to talk about autism a bit. Talk about our version of Autism and how E’s manifests itself.

What is Autism?
“Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. We now know that there is not one autism but many types, caused by different combinations of genetic and environmental influences.
The term “spectrum” reflects the wide variation in challenges and strengths possessed by each person with autism.”**

As mentioned above from Autism Speaks, the spectrum is a “wide variation” so something that one child with Autism exhibits is not the same as another child with Autism.
From the time that E was born, I had struggles getting him to connect with me. There was a period of about 6 months where he was very happy and he liked it when I would throw him into the air and I could get him to respond to me. It was however a lot more work to get him to do that then it was with A when she was an infant. During that 6 month period he was also good with other people. He still preferred me, but I could leave him with a babysitter and he didn’t mind. Around 12 months old he started to get more attached to me, and it started to get harder to draw his attention. He would sometimes go days without responding to me. He did make eye contact sometimes, but we had to work hard for it. Even when we did get it, he would be looking in my direction, but not into my eyes. I could walk into a room and he would continue playing with whatever he was engaged in and not respond to me at all. My husband Eric would get home from work and E would crawl right on past him.
He didn’t seem to mind if I touched him or if Eric touched him or if A touched him. Because of this, my mind never went to Autism. I didn’t believe he had sensory issues. What I was looking for however was Sensory Overload, when what my son really had was Sensory Seeking Behaviors. The reason he loved to be thrown up into the air was because he craved the movement. He stuffed everything in his mouth at once when he was eating because he loved the feel of it. He would come up and squeeze me tight because he was seeking the pressure. The things that I often mistook for affection were actually him trying to seek movement. I don’t doubt that my son loves me, but those were not the ways he was expressing it.
I had the sense that my E was behind in some areas, but I always figured he would catch up. He was a late crawler, he was a late walker, he was clumsy. He didn’t engage in normal play. He acted always much younger than he was.
It wasn’t until he was consistently around peers his age that I realized just how different E was. I was fine with him being different, but I started putting everything together and thought maybe he had Autism.
We were about to move across the country, so I decided to keep an eye on it. I did and in that time it started to escalade more.
When we finally did get the Autism Diagnosis, I was already in. I knew that whether or not it was Autism, my son had some severe delays. E is not low functioning, but he is not high functioning either. He has some big challenges he will need to overcome.

I share this not because I am so angry about the comments that people make. I wouldn’t know what to say in their place either. But I share this because the more we hear people’s stories the more we learn about the many variations of the spectrum.

 

**https://www.autismspeaks.org/what-autism

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