By Allison Perkins
My daughter was diagnosed with the disease at age 3. Call it a disorder or affliction – whatever makes you feel better. But it is a disease. Something inside this child causes her to flap and scream and act differently than “typical” children are supposed to. And it stinks.
Within three years of her diagnosis, two more of our friends’ children had received similar notes from their doctors. When we PCS’d to Hawaii, it felt like nearly every family we met had a child who either was diagnosed or who was in the process of being screened. It wasn’t coincidence. Across the country, the number of children receiving a diagnosis on the spectrum is rising rapidly. The Centers for Disease Control and Prevention reports a 20 percent increase in the number of children diagnosed with the disorder. Autism is unusual among afflictions because it affects every child differently. There’s no “typical” autistic child. I have learned, that among families, there is also no “typical” reaction to receiving a diagnosis.
I’ve met mothers who embrace their autism-hood with the fervor of a crazed sports fan. They decorate their car, clothes and Facebook pages with all things autism. I’ve met moms who are constantly attending meetings and walking to find a cure. They all gush about how great autism is. How it’s a gift, not a burden – that autistic children are special.
Yes. My daughter is beautiful. She is special. But that doesn’t mean I have to love the autism. That doesn’t mean I have to build her entire life around that single word.
I am tired of people introducing her as, “This is Rachel, she has autism.” I would much prefer, “This is Rachel, she loves birds and she is going to talk obsessively about them for hours, even after you ask her to stop.” Or even, “This is Rachel, she’s going to start screaming, stomping and biting when this social situation becomes a little too overwhelming but she really does want to be here and is trying.”
To me, autism is not special. It’s a terrible, terrible fate that I wouldn’t wish on anyone. It’s made my little girl, who in moments of lucidity, can tell you she wants to have sleepovers and go to scouts and ride her bike up the street just like other little girls, unable to do almost any of those things. When she tries, there always comes a point where the autism takes over and it is all too much for her to process. She breaks down. The worst part is that she knows she’s breaking down. After the screaming and the kicking has stopped she’s crying not because of what she’s done, but for what she knows she can’t do.
At a recent Girl Scout sleepover, while the other girls stayed up and giggled through the night, Rachel went into another room and cried herself to sleep. She wanted to be with her friends, but her body, her autism told her otherwise.
Because children on the spectrum can continue to progress and then backslide at any time, I am terrified for her future. I can’t imagine how she will be able to work or live once we are no longer here to care for her.
For now, at age 8, Rachel has made incredible strides that make her stand out as lucky. After saying her first word at age 4, she can finally speak in full sentences that make sense. Until about age 6 her responses were nonsensical, one-syllable words. She finally became potty-trained at age 5. She can swim and read simple words.
But, she has obsessive speech patterns, makes repetitive noises and has incredible difficulty managing her social skills. The medications doctors have given her over the years to manage her outbursts have turned our sweet little girl into a 120-pound giant who towers above her second grade classmates.
Every day is a struggle to keep her emotions in check. Every day of our lives is touched by autism. But I refuse to allow autism to be my life, or hers.
I don’t own a single autism bumper sticker. I don’t participate in the local autism walk.
While other parents use their autistic child as the reason they can’t leave the house, I am dragging my daughter to every event possible in the hopes that the more I make her do, the more she will learn to cope with every day social situations. While I have come to grips with the fact that Rachel will always struggle, will always be different, I have not accepted that Rachel equals autism and autism equals Rachel.
As a type-A, pro-active parent, autism is my worst nightmare. There is no easy answer. There is no cure. What works for one child may do nothing for another. There is no way to tell what her future looks like.
I love my daughter, but I hate autism. They are not one in the same.