autism spectrum disorder

April is Autism Awareness Month

Written on April 2, 2012 at 2:50 pm , by

And today is World Autism Awareness Day. If your child or someone you know is on the spectrum, check out these resources:

AutismSpeaks.org
Funds research, increases awareness and advocates for people with autism and their families.

AutismSafety.org
Addresses bullying, mistreatment and suicide prevention.

MyAutismTeam.com
A social network connecting parents of kids with autism with 30,000 autism-friendly service providers.

TheMiracleProject.org
Enables kids with special needs to express themselves through music, dance, acting and writing.

IANproject.org
Links researchers with the autism community and encourages parents to get involved in scientific progress.

Plus, hear from real moms who fought for their autistic kids and taught them to be independent adults:

“How I Fought for My Autistic Son,” by Joanne Corless

“Letting Go: How I Taught My Autistic Son to Be Independent,” by Glen Finland

All month long, we’ll be posting more dispatches from the ASD community. Find them all here.

Share your experiences with autism, or raising an autistic child, in the comments below.

Heather Eng is web editor of FamilyCircle.com.

Letting Go: How I Taught My Autistic Son to Be Independent

Written on March 1, 2012 at 1:00 pm , by

 

Guest blogger Glen Finland, author of Next Stop: A Memoir of Family, about preparing her autistic son for independence, shares part of her story here.

Skip the dolphin therapy. Hold the herbal supplements. We have found the cure. After all the expensive evaluations, therapies, and independent living programs for our autistic adult son, the best investment we ever made turns out to be his Metro farecard. For $1.35, David has bought himself a ticket to freedom—his own set of wheels.

In the summer of 2008 my son David and I spent weeks riding the Washington, DC, subway trains, not going anywhere, just, you know, riding from stop to stop. So it goes, when your handsome twenty-one-year-old is a rangy six-footer with a sexy five o’clock shadow and the mind of a good-natured adolescent. Pervasive developmental delays cause their own set of problems, and David’s is a kind of exuberance that reveals itself by his swinging an imaginary baseball bat whenever he’s really happy. Feet squared, wrists piled up high on his right shoulder, and swoosh! The impulse reflects an open innocence that’s way too friendly when it comes to strangers. At Eighth and F, Northwest, when a homeless man asks him for change, David pulls out his wallet and says, “OK, how much?”

But if he could learn to ride the Metro, my husband and I believed, then he could travel to a job site; and when he locked down that job, he could pay his rent. With a job and an apartment, he would have a real life. And who knows? Maybe even find somebody other than his dad and me to love him well into the future. It was a goal we could all agree on. David swung his imaginary bat whenever we talked about it.

So at the end of the summer David and I got cozy with all the different Metro routes. We visited the Zoo and met the guy who scrubs the elephants’ backs. We surfaced in Chinatown, where David walked around with a starry-eyed look on his face because of “the pretty Korean girls.” One morning, we hopped off at the Smithsonian for him to run to the Lincoln Memorial while I waited on a bench in a light downpour. Ever since he was a child, he could run like a deer, and in high school he had run cross-country. Another day, we raced up the escalators toward the wrong train and ended up lost, then doubled back and rode home the long way. We didn’t have anywhere we had to be that afternoon. No worries.

It stayed that way until the August evening when David told me he was ready to go it alone. We both knew this was coming; it was, in fact, exactly what we’d been working toward. I just hadn’t realized he’d be ready sooner than I was.

This first taste of autonomy was a reprieve from the nonstop commands that filled his days. Directions from me and all the teachers, counselors, and therapists who’ve always told him where to go, how to act, what to say. How numbingly tiresome it must’ve been, year after year after year, living with decisions someone else made for him.

Nowadays, everywhere he goes, he goes solo. When the train doors close behind him, he doesn’t bother to wave goodbye. It’s not rudeness, it’s just what’s missing from his Rules for Basic Living handbook. Riding the Metro, he chooses where his next stop will be, then steps out into the city a free man. Even though I no more know where he goes than the train knows where it’s taking him, David has learned to keep safe alone in the world. Another victory in my Letting Go Diary.

“I’m the boss of me now,” he says, answering all and none of my questions. But this is progress. So shut up, I tell myself, let him go.

Glen Finland is the author of Next Stop: A Memoir of Family due out March 29 from AmyEinhornBooks/Putnam. www.glenfinland.com

Read all our posts about autism here. And share your thoughts on Glen’s story, or your own experiences raising an autistic child, in the comments below.

“How I Fought for My Autistic Son”

Written on February 28, 2012 at 9:21 am , by

 

Guest blogger Joanne Corless was featured as our Local Hero from the story “A New Lesson Plan: One Mom’s Fight for Autism Education” in our April issue. Here, she shares her experience raising a son with autism.

I have three children, two girls and one boy. Kiersten is 21 and a nursing student in college. Kylie is 11 and in 6th grade.  My son, AJ, is 22 and has autism.

AJ was diagnosed in the summer of 1991 when he was almost two years old—just a few months after Kiersten was born.  When I received the diagnosis, I came home from the doctor’s office, sat on my kitchen floor and sobbed uncontrollably. All I could think was that my beautiful baby boy would never grow up to have a “normal” life.

I knew so little about autism. My only previous experience with the condition was with a teenage boy with severe autism and leukemia that I cared for as a pediatric nurse at Memorial Sloane Kettering.  My husband and I were devastated and frightened about what AJ’s future would hold.

I hopped from one doctor to the next hoping to get answers and find a way to help AJ. But there was very little support. The incidence of autism in 1991 was low—only 1 in 10,000 children were on the spectrum. There were no early intervention programs in our area that specialized in autism and doctors gave us no hope. I leaned heavily on my faith for comfort and guidance; I asked God to give me strength to find a way to make a better life for AJ.  I knew by the way my son interacted and responded to me that I had a very smart little boy underneath the autism. We were determined to give AJ all we had and promised never to give up on him.

The first few years were difficult. AJ’s autism took over our lives.  AJ presented with classic symptoms: no eye contact, no expressive language, very little receptive language, inappropriate play, no social skills and extremely rigid and challenging behavior. I felt very lonely and isolated.

When he was three, I came across a teaching method called applied behavior analysis or ABA: Trained instructors spend hours one-on-one with an autistic child, deconstructing a task—like tooth-brushing—into tiny steps until he masters it. This therapy changed AJ’s life. In the two decades that followed, I started the AJ Foundation for Children with Autism, which brought ABA programs to local public schools, and opened The Comprehensive Learning Center, a private ABA school.

Today I look back and thank God that we were fortunate to have all the support from our family, friends and a handful of very dedicated, extremely talented behavior specialists. AJ received quality intervention based on ABA for 19 years and he has achieved far beyond our expectations. He still has autism but is a productive member of our community. He has lots of friends, participates in many activities and earns a living by working three jobs.  He has a “normal” life.

Read all our posts about autism here. And share your thoughts on Joanne’s story, or your own experiences raising an autistic child, in the comments below.