Still Miles to Go

April is Autism Awareness Month. Although Autism has been getting good press, many still don’t realize it’s a spectrum. Language skills, social skills, and development can vary. And autism can strike anywhere, regardless of ethnicity, gender, and socio-economic status.

So I have a treat for you. One of my favorite mommies and bloggers agreed to write a “guest blog” about her experience with her daughter. You can follow her story more closely at Living Life with a Side of Autism. Thank you, Jen!

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She sat in the hallway. Alone. In a blue, plastic chair. She was told she wasn’t welcome. She couldn’t behave like that.

She was 3. Non-verbal. At school.

This was life for my daughter before we got her Autism diagnosis. She was treated like the bad kid in class, and every day I received what amounted to a verbal lashing from her teacher. There were exasperated sighs and advice on how to better discipline. I felt like a failure. I had messed up my kid. I was reminded of that each day at 11:30am, when I trudged into the school to drag out my screaming first born. Or maybe at 11:45 after she had stopped having a tantrum in the classroom because she couldn’t put on her jacket, yet had no words to ask for help. Not that it mattered. She was still the bad kid, words or not.

A lot of children are diagnosed with Autism around 2 1/2 or 3. Katie, however, wasn’t diagnosed until the month she turned 6. We went through years of evaluations and diagnosis after diagnosis, none of which really fit. First, we were told Katie had low self esteem. Then we were told it was ADHD. Then, that she was probably bi-polar. None of this explained her extreme language delay or social deficits, however. We were told everything from she just was choosing not to speak, to she just had a strong personality. No one took all of her symptoms and put them together. We were just given a different explanation for each concern we had.

Over the years, I have moved from being the mother who just sat there and nodded her head in agreement, to the mother who does her own research and fights for her child. When Katie went from preschool to Kindergarten, things really went downhill. Fast. She was having a lot of meltdowns at school, and eventually began hitting other students. I was tired of being told my child was just a discipline problem with a speech delay. I lived with her and knew there was more to it than that. I saw her rigid behavior. I saw her inability to transition and inflexibility when it came to change. I saw her not making any friends, not knowing how to play with her toys, and becoming more and more physically aggressive at home. I saw her unable to participate in childhood activities, such as dance, and soccer, and gymnastics. She would either meltdown or be off on her own. I saw how overwhelmed she became around large groups. How going to the busy store guaranteed us a meltdown. How she had severe anxiety over the smallest thing. How she had irrational fears. No, my daughter wasn’t spinning in circle or flapping her arms, but were those the only things that defined Autism?

We ended up making an appointment with a developmental pediatrician, who also had us get a private speech evaluation. When all was said and done, Katie emerged with a diagnosis of PDDNOS. PDDNOS is a high-functioning form of Autism. Don’t be fooled, though, high-functioning does not mean easy. At times I struggle with even calling her high-functioning, because to me she is not. Sure, she has functional language (though isn’t conversational) and has made strides socially, but she is also extremely aggressive and still has several meltdowns each day. Last summer things got so bad that I thought of moving out with Katie, because our home environment was not safe for my son.

Over the years her anxiety has gotten worse. She often needs headphones to make it through a car trip or music class. She doesn’t understand non-verbal communication, and still prefers to be alone if given the choice. She doesn’t understand that people have thoughts different from her. This year, in first grade, she started off hitting her classmates, and just recently pulled her pants down at school because she had an itch, not understanding why it was inappropriate to do so. She has extremely low self-esteem because she knows she is different

So, no, she doesn’t have severe Autism, but things are definitely not easy.

We are also trying to undo years of learned behaviors. Because Katie was diagnosed later than most, she didn’t receive behavior therapy as a toddler. We might be in a better place now if she had. We have been forced to fight the school to get her the therapy she needs (I am pretty sure my picture is up on a dart board somewhere), and spend an insane amount of money each month on private therapy. I strongly believe had Katie been a boy, her diagnosis would have come earlier. People don’t look at a girl lining up dolls in the same way they do when a boy lines up his cars. Meltdowns are looked as a girl just being dramatic. Being behind socially is looked at as just being shy. For every sign of Autism Katie had, there was an explanation. I see boys who are far less severe than Katie getting diagnosed years earlier. Autism is still looked at as a predominantly male disorder, and so girls are often left misdiagnosed, or not diagnosed at all. Thankfully, there is research going on that explores the differences in Autism between boys and girls. It is my hope that, in the future, families don’t have to go through what we have. I will personally fight to make that happen, too.

I want to end by saying it isn’t all bad. Katie is a wonderful, loving child. She is smart, and sweet, and talented. She loves to draw, and cook, and spend time doing girly things with me. There are really clear days where I can see exactly who Katie could be without Autism, and I fight everyday to bring that part of her out even more. No, we don’t look as Autism as a blessing here; we look at it as something that is holding the real Katie back. Until my last breath, I will do everything I can to bring out her full potential and make sure is happy and achieves her dreams. My daughter my have Autism, but Autism will never have her.