As most of my blog readers know, our lives have been significantly touched by autism. My only son, Jeffrey, was officially diagnosed as autistic in in 1999. We fought doctors for more than 17 years for a clear diagnosis, after being told by a psychiatrist at Emory University Hospital in 1990 that Jeffrey had "autistic like tendencies," and because he had only 8 or 9 of the 15 (at that time,) the doctor didn't want to label him autistic because he was afraid he would LIMIT Jeffrey's educational opportunities.
That is how much the autism community has changed in the last 18 years. Today, doctors can diagnose autism in an infant under the age of one.
Forgive me if I think wistfully of what my child's world might have been like had we had this diagnosis 24 years ago. His early childhood special education classes would have taught him to read in a manner more appropriate for a child with autism -- instead, Jeffrey would listen to the other children read and memorize the stories. When it was his turn, he would recite his part. To this day, he can memorize and recite hundreds -- maybe more -- movie segments, song lyric, and NASCAR statistics.
There were many, many early clues for Jeffrey, but no one could pinpoint autism -- not a gifted German doctor who took incredible care of Jeffrey in Wurzburg, Germany, not the world-renowned Psychologist at Georgia State who tested him in 1986, not the most thorough pediatrician in Atlanta who tested him for EVERYTHING from 1985 until 1992, when we moved to Louisiana. The puzzle pieces were there -- the just did not fit.
Today, Jeffrey is a healthy, happy man who towers above me at almost 6-feet tall. He has a beautiful girlfriend, a supportive work environment he loves, and a mother, father, step-father, grandfather, and all their extended families who love him dearly. He has never met a stranger, and he loved throughout Milledgeville.
But when I see Jenny McCarthy and Holly Robinson Peete talk about how intervention has changed their children, I wonder, why not mine? Autistic people are regimented -- changing Jeffrey now would be like unringing a bell. It hurts me, frankly, to see the media lose focus on these "gap kids" with autism. Sure there's an autistic woman who can write books, and a young man who can make free throws and will show up on Larry King Live. But hey there Sanjay Gupta, you want to see what life is REALLY like with a young adult with autism? As Rosemary Clooney once sang, "Come-on a my house." I'll show you what it's like.
The unconditional love.
The incredible stress.
The occasional anger and, sadly, violence.
The heartbreaking innocence.
The coy cleverness.
But most of all...the love.
Always, there is love.
If you have the chance to support an autism awareness group like Autism Speaks, I encourage you to do so. I'd give more, but could I really?
And if you yourself have a loved one with autism, you have my heartfelt love and prayers, but only if you send them back to us!
Much love, from Jeffrey and me.
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9 comments:
Thank you for sharing your poignant ans sweet story. He sounds like an incredible young man due I'm sure to the wonderful love he's surrounded with.
Blogs Hugs for Both of You
Alex
That's beautiful. I'm so glad that awareness and intervention is so much better these days. I hope they do find some more new ways to work with the autistic young adults who missed out on those interventions.
I have been thinking about you and Jeffery for the past 2 days...it seems like every story on CNN.com is about autism. I wondered what your take on all of it was.
It is really sad that doctors weren't able to diagnose him sooner because research (as you noted) shows earlier diagnosis helps tremendously. I guess one good thing about Hollywood getting involved is that if their influences can help one mother who feels helpless or lost, then it's worth it.
I can't imagine what you've gone through with Jeffery - but you've done an amazing job. He is a wonderful person and so very caring...you've done a terrific job raising him and just think if you weren't so determined to find out what was wrong all those years, what he'd be like today. YOUR research and determination helped him be as strong, smart and stubborn as he is. : )
Off topic, but you look really pretty in that last picture.
On topic, the one correction I have is that Jeffrey can quote THOUSANDS of NASCAR statistics. And he's told me most of them! :-)
Glad you did this post, and I too wish someone would do more on the "Gap Kids" like our Jeffrey.
As you know, love always makes the world go round. I am sure Jeffrey knows what a wonderful family he has.
I love me some Jeffrey! You have done an amazing job raising him - he is one helluva guy. I miss his hugs! He gives the greatest hugs - he learned that from his Mama :)
Please tell him that "Joyce" says hello!!!
Hi. I came to your site via a search for gf pound cake.
I recently wrote a short story for a project to promote awareness of Autism Speaks. During my research, I met so many awesome mothers. Everyday heroines. I found precious little written about help for adult people with autism. This lack rather struck me. As if the autistic child does not grow up. Adult people with autism seem to be treated as rather invisible.
Then again, so did we celiacs for many years.
Thanks for your site. Love it.
CurtissAnn
http://curtissannmatlock.com
As a speech pathologist I've worked with many, many children with autism. Today, I teach Developmentally Delayed preschoolers. If I think that a child displays some traits of autism I share the info with the family. Almost thirty years ago I interned with children with autism. I'm sorry that the professionals weren't able to identify Jeffrey's autism. I tell people that all the time that with or without autism, children deserve a loving environment. It sounds like you've give that to Jeffrey. I love my students no matter what they bring to the table. My best to you and Jeffrey.
Ginger,
What an awesome post. You hit the nail on the head.
I just discovered your blog and am looking forward to some great reading as I catch up.
Thomas
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