Thursday, April 2, 2009

Autism Awareness Day

Today is Autism Awareness day. This day is particularly important to my family. Our oldest son Levi has been diagnosed as high-functioning autistic. So today is a day where I can help others understand what Autism is and what it is not.

Autism is defined as:

Autism is a brain development disorder characterized by impaired social interaction and communication, and by restricted and repetitive behavior. These signs all begin before a child is three years old. The autism spectrum disorders (ASD) also include related conditions such as Asperger syndrome that have milder signs and symptoms.

- Wikipedia Autism

Autism is not easily defined. It is a spectrum. This means that there are varying degrees of autism. There are those that are severely affected by this disorder to where they cannot function in society. There are others who are "minimally" affected by the disorder and can function in society. This in no way diminishes the severity of the disorder because there are episodes that occur in high-functioning autistic people that can be problematic.

The following sentence was my way of trying to explain what it feels like to be autistic. It was pointed out that this might not be the best way to do this and I agree. I am constantly learning and will try to express my thoughts better as I grow. The biggest problem for the autistic person is the feeling of being trapped in their body.

They have a difficult time communicating what they feel. They have a hard time putting things together that most of us don't even think about. They can obsess about things and become a one-track mind.

A source for the disorder has not been found. It is one of the great mysteries in medical science. There have been theories, but none of them have proven to be the source for Autism. There are medicines that can help autistic people remain in control. There are diets that have shown promise to some autistic people.

As I said above our oldest son Levi (above) is high-functioning autistic. This is a blessing as well as a challenge. High-functioning means that he has the capacity to function as any other child. He can go to school with others his age and only have to receive help as needed. He does take some medication to help him be able to communicate better without getting so frustrated that he loses his temper.

Levi does obsess about things. It's usually the worst during the birthday/Christmas season (all of our birthdays fall between September and January). Right now he is obsessed with owning and caring for a hamster. It takes time to work with him to help him understand what it takes to care for a hamster. It takes time to help him understand the costs for having a hamster.

It takes patience to work with him on doing chores, explaining why he can or can't do certain things, understanding what he wants to do. It takes patience to know that when he says "I hate you! You're stupid!" that it's his frustration coming out and that deep down inside he does love you.

There are times though when the true Levi comes out. When he tells you that you are the best dad ever. When he does things on his own without being asked. When he plays with his siblings and shares and gives them help. The times when the light of discovery hits and he has wonder and awe in his eyes.

I hope that this has helped you understand autism better. I hope that if you see me with Levi and he seems to be on the attack you will understand that this is part of his disorder and not his real self. I hope that you will be able to ask what you can do to help in these situations. I hope you know that we as his parents are doing our best to ensure that his life is fulfilling and that he can function in society. And most importantly I hope you understand that autism is a challenge and that like any other challenge there are ways to overcome and that sometimes patience is the key. I hope you also know that I wouldn't change anything that has happened over the past 8+ years that Levi has been in my life. I have grown and learned and am a better man for having dealt with an autistic child.


Jigme Datse said...

This is a great article. You have done a great job of explaining what this means to your family, and all of that. I really appreciate that. I know a fair number of people on the Internet who are affected by Autism Spectrum Disorder. Some are Aspergers diagnosed, and others have children who are diagnosed as some kind of Autism. Also some of the people I know around hear have Autistic Spectrum Disorder in their family. So I have t say I know it's out there and important for people to know about.

Some are "idiot savants" (not that I like the term), but honestly not very many. Thank you for this.

Jigme Datse

TopSurf said...

What an excellent post on Autism. You have explained it perfectly. Thank you for sharing your experience.

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poppingbubbles said...

Beautifully said BJ. A very good friend of mine has a little boy who is autistic. He is high functioning, but there are still times when autism rules Zack instead of the other way around. Parents like you and my friend amaze me. You have explained autism perfectly here. I love this post.

Thank you for writing and explaining so eloquently!

apes said...

BJ if I remember correctly Heavenly Father made the right choice in picking you to be this boy's father. You're an awesome guy and I know you're a great father. Stay strong.
Thanks for being willing to share your insights for those of us that still have to learn about these things. Truly you are great.