Tuesday, April 1, 2008

Autism Awareness Month

April is Autism Awareness Month.

I first became aware of autism about nine years ago when I began to reconcile my meager readings on the subject with the behaviors of my toddler. At that time, autism was not a common word. It was not a frequent daytime talk show topic. In fact, when I graduated from college with a degree in education in 1997, I had heard the term mentioned only once or twice during my studies.

Later that year, we became the parents of a beautiful baby boy with dark hair and thoughtful brown eyes. I read about parenting in books, magazines, and the newly discovered world of the Internet. From time to time, I stumbled across a mention of autism that would cause me to pause for a moment. Eventually I began to pause more frequently and for longer periods of time. Finally, I printed off a list of warning signs for autism and went through them, one by one, to prove to myself that my instincts were wrong.

They were not.

After documenting his repetitive behaviors, sensory issues, social impairments, obsessive interests, lack of eye contact, and echolalic speech, a neurologist diagnosed our little boy with high functioning autism in the winter of his fourth year. We were simultaneously devastated and determined. We were devastated by the loss of our expectations and dreams for our son. We were determined to do everything within our power to ensure that he would have the opportunity to live up to his potential.

In the six years since his diagnosis, we have had headaches, heartaches, and countless victories. We are blessed to live in a community that embraces its children and disregards whatever labels may be attached to them. (At this point, doctors feel that the proper label for our son is Asperger's Syndrome.)

While we initially asked ourselves what we had done wrong or where this disorder had originated, our approach is much different now. We know that autism is a genetic predisposition that is probably triggered by an environmental factor. We know that there is no cure, that blaming someone is futile, and that our focus must be on the future.

We have had slaps in the face during the course of our journey. When I quit my job to stay home with the kids, we discovered that health insurance companies will not insure children with autism, even though there is no medical treatment involved with the disorder.

We have been chastised for immunizing our children by those who believe in the link between immunizations and autism.

We have been told to seek genetic counseling before having more children because we wouldn’t want to risk having another child affected by autism.

People’s interest has grown in the last few years, probably because of the increased attention that autism has received. In the past 10 years, the diagnosed cases of autism have skyrocketed. When the neurologist laid the label on our son and sent us out the door with three sheets of paper that explained the disorder, the estimates were that one in 10,000 children would be diagnosed with autism. That estimate is now one in 150. As a result of those numbers, the amount of literature and media attention has increased exponentially.

My concern about Autism Awareness Month is that the media, which tends to dramatize and focus on negativity, will spread the myths about autism and dash the hopes of those parents who are just beginning their journey with a child on the autism spectrum.

Before today, I have never written about our experiences with autism. I don’t want to exploit our son, and I don’t want to elicit sympathy. However, I realize now that our experience could be valuable for someone who hears the myths or the negativity portrayed on television. In the call for a cure and the rush to blame autism on the medical community or parenting skills, our family – our son – can provide hope for others who are in desperate need for it.

We have had setbacks, but overall, our journey on the autism spectrum has been a story of success. Our son is a fourth grader who hates homework and loves summer vacation. He adores his baby sister, can build a complex electrical circuit, and sings beautiful hymns at church. He has a wry sense of humor and a gentle heart. The past six years with him have been far better than what I imagined as we left the neurologist’s office that winter day.

Our son probably summed it up best when we discussed with him his diagnosis when he was 9.
“You’re not going to try to change me, are you? Because I like how I am.”

A world without people like our son would be flat, uninventive, and stale. While it surely has its challenges, it has also expanded our thinking and made us better parents. We don’t seek a cure or someone to blame. We seek a way to teach him to live within this world, and we seek a world that will accept his contributions.

We have found that world in our small, rural community. I think the world could learn a lot from rural America.


Mum-me said...

My 13 year old nephew was diagnosed with Asperger's Syndrome when he was about 3 years old. He also has a great gift for things electronic. It's been a complicated journey for that family too. Good on you for writing about autism - I'm sure it will help to raise awareness of the condition.

Anonymous said...

My grandson has Aspergers and we just consider him to be extra special. He is very smart and math is his best subject. He is 8 years old and in the second grade, His class mates accept him as one of them. He has a special teacher that has 23 other students in her class and still gives him the extra attention he needs. He has his ups and downs but the ups out number the downs for all of us. His speech is improving but he still has speech once a week. He loves the computer and can do things I didn't know were possible on it. He is our special Elijah Lee and everyone loves him and he is very loving.

Beth from the Funny Farm said...

We do a fundraiser each year at a barrel race for Autisim. One of our friends has a son with Autisim. It is great that the news media is really getting the information out there about the symtoms and treatments of autisim this month.

Queen B said...

Thank you for writing such a beautiful post on Autism.

I appreciate your honesty & optimism!!

Anonymous said...

I have a friend with a 6yo who was diagnosed with autism at around 3 or 4, and a son that's about 2 that they expect will be diagnosed as well. I've been with her through the heartaches and joys of her two boys, and have seen her work her way through feelings of guilt and anger and acceptance to the plain and simple fact that she wouldn't trade her children for anything in this world. (((hugs)))


Happy Mommy said...

Thank you for sharing you story.

Dad said...

Erin has a tendency to gloss over her own contributions. When the situation became clear she developed a steely resolve to DO WHATEVER IT TAKES TO ADDRESS THIS.
Her countless hours sifting thru mounds of chaff to find a few useable grains of wheat have resulted in an ongoing education for her son, family, school, and community. We have all benefitted from her dedication. To borrow from a better writer than I-I think the world might learn a lot from Erin.

Let Them Be Little said...

Thank you for sharing that.

Robin said...

Nicely said Dad. You have an amazing girl there. But you knew that.

Anonymous said...

Very well said..


Cate said...

My nine-year old nephew is also on the spectrum though he has improved dramatically since his diagnosis at age two thanks to lots of therapy and treatment. They done everything they can for him and it shows! He's in a normal fourth grade classroom but he does have a TA. He's bright, funny, and one of the sweetest kids you'll ever know.

He describes autism and the inability to express himself this way: It's like being in a room with a golden violin. It's beautiful. You know you can play it. You want to play it, but you just can't get across the room to pick it up.

Personally, with that observation, I think he expresses himself just fine.

Shannon said...

Thank you for sharing your parental point-of-view with the world. I am a Speech-Language Pathologist and have worked with many children with Autism or with autistic-like characteristics. As a professional it is encouraging to see parents work through their grief and embrace their children for who they are! I'm touched by your story!

Anonymous said...

Erin, I'm very new to your blog, but this post will keep me coming back for more. (I found you thru PW's site)

I became a Special Ed Aide in our school district 5 months ago. I was placed with a Special Day Class for 5 little boys and a little girl K-2. I admire the parents that take charge of their Special kids the way 'dad' described above. Wow. I enjoy my job as an aide and only wish I had known about the position earlier!

Tammy said...

Thank you for this post. I found you quite by accident through PW's blog.

My child has so many issues and I have been searching the internet for information.

I really appreciate someone who is candid and positive. Thank you!

ZenPanda said...

I watched my 17 yr old nephew who has Asperger's Syndrome graduate form High school this weekend.

He was diagnosed when he was 12. Before he was medicated he had violent outbursts and was very hard to have around. After the diagnoses we were able to get information which made being with him more enjoyable for everyone.

He has worked for McDonald's now for almost 7 months. He is doing well there but has very little to do with the customers. My concern for him now is what are his options for career and life. He is not going to college as of yet but it may be in his future.

What hopes do you have for your son when he is an adult (which is not as far off as it seems)?

cndymkr / jean said...

You introduced tom me Temple Gradin, a woman I had never heard of before. I watched the HBO special and I was just blown away by her. Thank you. I just found a speech she gave at TED and thought you might be interested to hear it.

Mrs Twiggy said...

I have such high respects for you parents who were willing to face the extra needs of your child.
My step brother was not diagnosed until he was 18 with aspergers, despite teachers constant suggestion that he needs specialist help.
Unfortunatly right after diagnoses his mother left him with nothing more than a caravan to live in and little money, and no basic abilities.
Its great to see so many parents willing to look beyond their pride of being labelled and considering the best interests of their kids instead.

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