In honor of National Austism Awareness Month, I'd like to share my own experience with Autism, and the Asperger Angel who has left her footprints forever on my heart.
We always suspected my daughter was different, even from the time she was just a toddler. She looked like any other sweet little girl, but prickled at loud sounds, stiffened when we hugged her, and though advanced in her speech, she lacked the ability to connect emotionally. Also, physically, she couldn't master eye/hand coordination and balancing skills. She could walk and even ride a bike, but when running or dancing or anything meticulous, she just seemed awkward, for lack of a better word. We put her in ballet and gymnastics, in an effort to help with her physical limitations, but it just frustrated her.
We talked to the pediatrician, who said she was simply shy and uncoordinated. We accepted that, until in her third grade year I had a friend, a mother of one of my daughter's classmates, tell me she saw our daughter freeze up in the hallway at school between classes when the halls were chaotic, as if she'd shut down. It scared us, so we had her tested for neurological disorders. Everything came back normal, and the word “Autism” was never mentioned by anyone. It was assumed that because her vocal communication skills were above normal, as well as her reading comprehension (she could read at a second grade level in Kindergarten), that nothing was wrong.
That was some twelve years ago, before Asperger -- a high functioning form of Autism -- came to public light via the media and other venues. So, as the medical examinations all came back normal, we decided to accept her differences, adapt our lives around them, and move on. To support her school career, I became very involved in PTA. I volunteered three days a week in her elementary classes to assure all of the teachers knew me personally, and the children as well. It worked wonders. The children liked me, so they were kind to my daughter, and just accepted her as is, even though she could never really relate to any of them on a personal level. When it came time to move on to sixth grade, I knew things would have to change. Public middle school and high school would eat my awkward and painfully shy daughter alive.
I had her moved to a private school with wonderful, loving teachers, small class sizes, and a strict set of rules and routine. What I didn't know at the time, was that was the best thing for her. Asperger children thrive on constancy and regulations. Any change in routine is often viewed as an imposition. If something upsets their balance, the reaction can be anywhere from volatile to introverted behavior. That's why my daughter shut down in the hallway at school those years earlier. It had been the first time she was required to switch classes between periods, and she basically removed herself mentally from the equation because it was too much to process.
It's not intentional belligerance. It's literally painful to them ... any variation is a disturbance in their world, and this makes them uncomfortable--physically, emotionally, mentally. With our daughter, if we explain why the alteration is necessary ahead of time, it builds a bridge for her emotionally so she can cross to the change. We know that now. We didn't then.
So, we settled into the private school life and though she didn't thrive socially, she found her own little niche and thrived academically. To try to boost her social life, we put her in some modeling classes run by a good friend of mine. It was less demanding than the ballet classes we'd tried when she was younger, and we hoped she might master coordination and confidence through the training. Amazingly, it did help. She started to look people in the eye, something her instructor worked with her on, and she outgrew her tendency to slouch into herself. But she still couldn't forge those social networks other children seemed to ace so effortlessly.
One evening, close to my daughter's fourteenth birthday, my sister-in-law saw a report on Dateline about about Asperger’s and recognized several of the symptoms. She called us, and though my heart broke, it was an answered prayer, because if nothing else we now had a name to put to our daughter's disorder.
One evening, close to my daughter's fourteenth birthday, my sister-in-law saw a report on Dateline about about Asperger’s and recognized several of the symptoms. She called us, and though my heart broke, it was an answered prayer, because if nothing else we now had a name to put to our daughter's disorder.
All of those years prior we had no idea why she seemed so clumsy in her motor skills, shy and awkward in social situations, and why she couldn’t express emotions (she still has problems with body language and non-verbal communication to this day). With us finding out so late, she was old enough to recognize this means she wasn't "normal like other kids her age" -- augh... what is normal, really?! -- and it’s been difficult to motivate her to work with us to find treatment.
Now she's a senior, and we're contemplating her life as an independent adult. There are foundations that help Asperger young adults make the transition to functioning adulthood and the workforce. Unfortunately, there are none locally that we can turn to. So I'm looking into fixing that in my city.
To all of you with a young child who's been diagnosed with a PDD—I understand that you feel alone. I understand you're overwhelmed with adjustments, treatments, etc... But take heart. Finding out early on, your child will learn to take his/her differences in stride and grow into a sense of self without comparing him/herself to others. Because really, why does it matter if we're "like everyone else?" We're people either way, no matter our differences. We all have something to contribute to this world. A place where we belong.
Bask in your child's accomplishments, and don't be afraid to set your expectations high. They will surprise you. Children with PDDs are incredibly artistic and bright. My own is far above average in English, spelling, and writing skills, and can draw amazing Manga-style cartoons without ever having had an art lesson. The only thing that is keeping her from pursuing an art career is her dislike for letting people see her work.
Also, and most importantly, they see the world with a refreshing frankness and openness and everything is very literal. Which has taught me to rethink the way I look at things; to appreciate life on a whole different level. My daughter has been my teacher, when all this time I thought I was teaching her.
Also, and most importantly, they see the world with a refreshing frankness and openness and everything is very literal. Which has taught me to rethink the way I look at things; to appreciate life on a whole different level. My daughter has been my teacher, when all this time I thought I was teaching her.
You’re going to hear the phrase, “You are your child’s best advocate” a thousand times over. Truer words have never been said.
But even those of you who don't have to face these issues in your family can be advocates. Teach your children to approach other people's quirks and discomfort levels with a compassionate heart. I can’t imagine how it would feel to live in a world where you are constantly battling that feeling of disconnection. But that’s what Autistic people face every day. They're stronger than any of us give them credit for.
Teach your children to embrace others as the individuals they are. That differences are what make us unique. Tell them that they might just find that this person has something amazing to offer them, something new to show them. And most importantly, remind them to be kind. Because more likely than not, the person they're taking under their wing is someone else's precious angel.
