While on the train yesterday, I read the cover story about you in People Magazine. Bravo for you and your beautiful son. Thank you. Anyone who is talking about autism and its very real effects on a family must be celebrated.
Your son is 5 years old, and as a fellow parent of a child diagnosed with an Autism Spectrum Disorder, I know the joy and relief that comes out of seeing your child make significant progress thanks to intensive early intervention. That is the message of your book…Act early. Be relentless. It makes a difference. But you scare me when you talk about your child as if he has recovered from autism. Even the title of your book, “Louder Than Words: A Mother’s Journey in Healing Autism” makes me wince a bit.
Autism is forever. When a deaf child gets cochlear implants, he is still deaf. What you are doing will help minimize the symptoms and stigma of autism in your son’s life, and will give him the best chance of leading an independent and fulfilling life. But you haven’t climbed the mountain yet. You’ve scaled a small hill next to the mountain. The mountain is still ahead of you.
Don’t ever think, even for a moment, that you have autism in the rear-view mirror. The experts will pat you on the back and say “job well done!” Don’t fall for it. Don’t take your eyes off the ball. You’re not fighting for today, you’re fighting for tomorrow.
I was in your shoes 6 years ago. I had a 5 year-old who thanks to intensive early intervention made incredible progress in a very short amount of time. On the day my daughter was diagnosed with Autism at 2.5, I was 9 months pregnant with her sister (who was born 6 days later). My daughter sat in the room with the pediatric neurologist and stacked blocks while refusing to answer the simplest of questions or even acknowledge that anyone else was in the room. So when the diagnosis of PDD-NOS came a few minutes later, I wasn’t shocked. Up until that point, I had somehow convinced myself that she knew all the answers, but just didn’t want to speak. I said those ridiculous words out loud, but deep down, I knew. I thought that because my pediatrician kept dismissing my concerns about her development, that she would miraculously start speaking and be “normal” one afternoon. Lesson learned: A mom’s instinct is never wrong.
For a year, I was overwhelmed with parenting an infant, getting services for an autistic child who couldn’t put two words together, and my father’s terminal illness. Then I started connecting to other parents, and I realized that a passive approach wouldn’t cut it. I found my advocate’s voice, and fought like the dickens to get my daughter the services I knew she needed. Watch out to anyone who stood in my way. A typical day would include a preschool program for 2.5 hours, a quick lunch and a nap for both kids, then an afternoon filled with therapy sessions. A typical week consisted of a combination of a couple a days of oral motor therapy, a day of speech therapy, and a couple days of occupational therapy, and a day of physical therapy. In between, we intensely worked on the most basic skills at home. It was more than a full-time job.
Shortly after this intense program began, she started to show amazing progress. Quickly. She put words together, and then those combined words turned into thoughts and sentences. She found connection to the people that were closest to her. She played with toys appropriately. She started reading. Every day was a new miracle. By the time she was your son’s age, the world of autism seemed like a distant memory. She was fully included in mainstream classes in school. She still required special education support for sensory and social issues, and she struggled in math, but there wasn’t a conversation we couldn’t have. Like with your son, it was a gift that she could explain to me what she was thinking and feeling while she was stimming. If I was a famous actress dating Jim Carrey, I’m sure I could have written a book about my daughter’s “healing” from Autism just like you did. There were teachers and therapists who questioned that she was even autistic to begin with!
But Jenny, children don’t stay 5 forever. Embrace the gifts you’ve earned to this point, but keep autism in front of you. Don’t let yourself think you’re going to push it completely away. Ever. Now at 11, my daughter has above average measured intelligence, is fully verbal, and is a joy to be around. When she was 2.5, I was told that she may never develop language. Now she will walk up to me, give me a big hug and say “I love you, Mommy” freely and easily. Her diagnosis is now officially Asperger’s Syndrome which is the high-functioning end of autism. Non-verbal language and subtle social cues completely escape her. That’s harder to learn when you made it this far on outstanding rote memorization skills. She can retell plot, but doesn’t get the “big picture” easily. Emotionally, she’s a lot younger than her 11 years.
She knows she has Asperger’s Syndrome and what it means (she reads books on the subject meant for adults), and “autism” is not a dirty word in our house. It’s part of who she is. I truly believe that to treat autism like a curse, to be ashamed of it, or to act like its symptoms are repulsive will destroy my daughter’s sense of self. Autism is just one of the many things that make her an incredible young lady, and I treasure every inch of her…including the autistic parts that cause her to obsess about a single topic for hours on end, retreat in social situations, or cry when routines change.
And you know what? I still have to fight aggressively to get her the support she needs, just as intensely as I did when she was 3. Now she’s approaching the age where I am trying to teach her to advocate for herself. My goal is for her to be able to say the words (in her own way, of course): I have autism. I can’t do it like everyone else, but if you give me the chance and you rearrange your expectations a little bit going in, I’ll do it better in the end.
Would I rather have two “normal” kids? Actually, I don’t know. I think my daughter’s autism has made me a better person. It certainly made me a better advocate. If my daughter cared about what people thought of her as other pre-teens do, would she have that same genuine sweetness she now possesses? I don’t know. I don’t have the ability to turn back time, so I don’t know what could have been.
All I know is that I wouldn’t trade my girl for anything, autism and all. I hope in 6 years after the many battles I know you still have to face, you’re saying the same about your son.