Where do I begin? First of all, I just need to ask, “Does autism have a look?” My youngest son, who will be turning 3 years of age in September has been recently diagnosed with Autism Spectrum Disorder. He’s considered high functioning because of his vast vocabulary skills and his ability to label and ask for things. When I observe my son, I see a child who embarks characteristics of Aspergers Syndrome. He’s highly intelligent, can count up to 30, and knows a lot about transportation! He’s great at putting puzzles together and singing songs. He really is a gem. I don’t know much about autism (after all, I’m a new autism mother) but this much I do know: ASD does NOT have a look! ASD is a communication disorder. Not necessarily a language disorder but a communication and social interaction disorder. You can’t look a person in the eye and say, “oh, he doesn’t look autistic!”
As I’ve begun the process of having Ethan referred for CPSE (Committee on Preschool Special Education) now that he’s close to his third birthday, I’ve had to go through the process of having him evaluated all over again: Psychological, Special Education, ABA, PT, OT, and Speech! It is extremely overwhelming for us but it is something that has to be done. I’ve had one evaluator in particular look at Ethan and question his “autism.” He must have said it three times! “He doesn’t look autistic!” I seriously wanted to punch him in the face! What do you mean he doesn’t look autistic? What does that even mean? Are you implying that my son was wrongfully diagnosed? Are you also implying that I don’t know anything? If autism has a look, then what the eff does it look like?!
I went straight to google and typed the following: Does autism have a look? I found an article by CBS News that explains the facial features that show the disorder. Although many boys with ASD have wide, deep-set eyes and wide foreheads, these features do not diagnose what is known as a communication disorder. There are many “normal” people with those features out there! How come they’re not “autistic”?! Oh, and do you want to know something funny? The evaluator had a wide forehead and wide deep set eyes! So what does that tell you??? Guess he’s autistic ’cause he looks like it!
This whole ordeal has left me wondering whether or not most doctors, evaluators, or therapists are up to date when it come to ASD. I’ve received information that is contradictory from doctors and evaluators. Some have said that Asperger’s Syndrome is part of ASD while others (including this one evaluator) say that the syndrome no longer exists! I suspect that Ethan has Asperger’s Syndrome because he is extremely functional and intelligent. He prefers to interact with adults and his brothers but not with his peers or cousins. He lacks social interaction.
However, if there is a lesson to be learned from all of this (because I believe there is ALWAYS a lesson to be learned) the lesson is this: I have to fight for my son! I have to be fully aware about ASD and stay current about this extremely broad disorder. Like I’ve mentioned before, I’m new to this. It’s exhausting, puzzling, time consuming, and overwhelming to say the least, but Ethan needs me. My baby needs me to speak for him. Yes, he has language and a wonderful vocabulary but he needs me to communicate for him because autism is not what you look like! It’s how you interact with the world!!
The next time I am told that my son doesn’t look autistic, I’m going to ask for their credentials and direct them to read the articles found in http://www.autismspeaks.org!
Thanks for reading and for allowing me to vent a little. If there are any of you out there who are autism mommies, daddies, aunts, uncles, grandmothers, teachers or whatever, please comment down below. I need your support because I am new at this. We can help support each other! I LOVE to read your comments 🙂
Until next blog,