Wednesday, April 2, 2008

Autism Awareness Month...

April is Autism Awareness Month.

Likely you've heard the term "autism" at some point, and you may have a mental picture of what you think that looks like. The truth is, it can look quite different from person to person, depending on where they are on the autism spectrum.

In its overview of "What is Autism?", the Autism Speaks web site begins to define it as follows:

Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe. (Click here for the rest of their "What is Autism?" text.)

Another disorder that you may have heard of is Asperger's Syndrome, which also falls on the autism spectrum and shares several characteristics with classic autism. Some children will meet some diagnostic criteria for Asperger's but not others, thus they may be given a diagnosis of PDD-NOS, which stands for pervasive developmental disorder - not otherwise specified. Rett Syndrome is yet another autism spectrum disorder.

A hallmark of autism spectrum disorders is an impaired ability to interact socially and appropriately. As you can imagine, this can be detrimental when it comes to making and keeping friends. Certain characteristics of the disorder make learning difficult, which can lead to difficulties in school work.

Oftentimes, parents seek to keep their child's diagnosis a secret, lest their child be subject to bias or judgment. Yet, when other people in the child's life -- coaches, Sunday School teachers, even family members -- don't know why the child is acting in a peculiar way, they often simply write the child off as being weird or bad and the parents as having no control over their child or not disciplining him enough.
While it can be hard to tell people about an autism spectrum diagnosis in a way that will help them truly understand it, it can be more detrimental to the child not to. It's a tough choice each parent must make on a case-by-case basis.

The cause of these disorders is not known, nor is there any known cure. With early diagnosis and treatment, however, the outlook for children on the autism spectrum gets brighter all the time. Many who are on the spectrum can grow up to become fully functioning adults, successful in their chosen areas of education and career, marriage and family, despite the difficulties these life-long disorders present.

Our family has had first hand experience with Asperger's Syndrome/PDD-NOS. Personally, I can say how frustrating, confusing and heart-breaking it can be to deal with some days. Some days, you want to shout at your child and say, "Just act normal!" while you know that it is not really a choice for him. Yes, behavior can be modified and deficiencies can be mitigated, but it takes time and patience and a lot of love. You know there are just going to be some of those days. But then there are the days when you see how far things have come and it is such a blessing.

Sometimes you'll see puzzle piece logos representing autism organizations. That is so appropriate for a lot of reasons, not the least of which is because dealing with autism can seem like a huge puzzle.

Over the past couple of years, I've learned a lot about autism from Ali Edwards' blog. Ali, who happens to be a celebrity in the scrapbooking world, has a son with autism. She's shared from her heart a lot of what their family's journey in the world of autism has been like. She also has a great page of links about autism. I won't repeat them here...just check out her site and browse.

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