This is a new thing for our family - autism. I could go into a detailed back story of how and why our eldest daughter wasn't diagnosed until age 13 - signs assumed to be quirks, delays thought to be laziness, singular, random melt-downs so far a few between that the connection was lost. At 3 years, she was "tested" by a group in North Carolina - the answer, "believed to be on the spectrum, but not specific due to abilities to be interactive with others." I left it at that. I was uninformed and uneducated - the few autistic individuals I knew were more in the realm of Rain Man, the more typical assumption.
She can talk, she interacts, and she doesn't scream about things. Sure, her speech was hard to understand until well after 5 years and her sentences condensed to short staccatos of random words. No, she wasn't interested in pretend play with other girls (or on her own) and didn't seem to have a grasp of volume control when "talking" to herself. But - she was happy, easy-going. She was the infant who was happy in anyone's arms, the baby who never cried unless she was injured, the toddler that had only one all-out tantrum. Yet, there wasn't the usual "comfort found in mommy" connection, no communication for being hungry, wet, or tired.
With number two born 19 months later, I was grateful of her seemingly low-maintenance personality, especially when our son was quite the opposite! :)
It wasn't until a few poignant events, ages 11-13, that something didn't settle for me. With pen and notepad, I began writing it all out - the "quirks," delays, previous findings, aversions to strange things and fixation on others; those events that didn't add up, didn't make sense. I researched and began asking the "right" questions with her and finally talked to our pediatrician. "I think that I should refer her to the behavioral science group at the University of South Florida and that she should be tested for Autism Spectrum Disorder." What?! No, no, no - she makes eye contact, she can talk - there is just something else up, right?
After completing a stack of paperwork, I received a call from one of the psychiatrists at USF. Three hours later, after numerous questions, she wanted to move to the next stage - observation and testing with our daughter. She strongly felt that she should be tested further. After a five hour appointment and a month of the psychologist's team's viewing of videos and questionnaires done that day, my husband and I found ourselves in the Dr's office again. Yes, she was definitely on the Spectrum, Autism specific in it…with an anxiety disorder. Although we were prepared to hear "spectrum," it still felt like our world took an unexpected tilt.
Everyone diagnosed is different - let's just start there. There are variances in the levels of autism, in scope - it is truly wide and intimidating. What I want to share is what autism looks like - for
this teenage girl.
She is smart and scores well when academically challenged. Her aspirations are to be a large animal vet and if she puts her mind to it, I know she will be one! Although her facial expressions are not as varied as my younger two, her smile can brighten a room. She comes across as shy to most - unsure about what she should say or do, worried about not reading someone's body language correctly. She will start a therapy group for that next month, though -given a safe place to practice and working with people who understand the complexities of the austic brain far better than our hours of research and reading possess.
She is also quiet, unless she has something to say. She is sensitive - especially to anything perceived as criticism. She defends other's quicker than herself. Although sarcasm is lost on her, her world being very black and white, she has a quick sense of humor and her laugh is contagious. She is loyal - trust may be very slowly earned from her, but once she does, she is fiercely loyal.
She has a super power - an unexplainable connection with animals. She can quiet the wildest of horses with her voice and soft touch. This ability became apparent when she was just shy of two years old and wandered towards a pit bull, whose owner was on his cell. When we saw her, she was laying stomach-to-stomach, babbling at the dog and the owner had ceased his conversation and was standing with mouth agape. "I don't understand - he hates children and bites! But then she came up - I swear, I didn't see her - and he sits, then lays down, then this - " gesturing to the scene before him. The incident wasn't singular and we now call it her super power, one that will certainly come in handy with a rowdy elephant in the future!
That is the thing - about autism, ADD/ADHD, other medically termed diagnosis with "disorder" looming at the end. It isn't a disorder, not necessarily, it is a difference. Sure, the brain may have to be taught certain social cues and how to wrap the mind around what isn't black and white, what is grey. But that same brain can access things that ours can't - whether with animals, the ability to pick up musical instruments with ease, or telling what day of the week was March 28th, 1763 - those are super powers! I shared with her about the girl with autism who never spoke. People assumed she wasn't smart, so she taught herself how to read and write - now? She is a published author! She can't make the words in her mind come out of her mouth, but boy can she write them! (See, back to writing!) Would she have that unique ability to describe what most often limit to speaking if she could form those words verbally?
Since navigating these waters of autism is so new to us, the learning curve so wide, I am sure this will not be the only blog I will post on the topic. I did want to introduce this "let's be real" first as it is one, of many, in which fills those pen hued pages of notebook. It is life and it is beautiful.
