Friday, April 4, 2014

Autism And My Brother In Law

World Autism Awareness Day was Wednesday. 

The purpose of World Autism Awareness Day is to increase awareness about a developmental disability called autism.   The Merriam Webster dictionary defines autism as:

"A developmental disorder that appears by age three and that is variable in expression but is recognized and diagnosed by impairment of the ability to form normal social relationships, by impairment of the ability to communicate with others, and by stereotyped behavior patterns especially as exhibited by a preoccupation with repetitive activities of restricted focus rather than with flexible and imaginative one".
 For us, these are more than just words.  And, too often, people do not hear about autism until someone in their life is diagnosed.  For reasons we do not totally understand (there are many theories, and the purpose of this post is not to debate this) the incidence of autism is rapidly increasing in the United States.

Autism is known as a spectrum disorder - two people with autism can appear very different.  But, one thing needs to be kept in mind - people with autism are, first, and foremost, people, not a diagnosis.

Regular readers of my blog know that I have a brother in law with autism.  My brother in law is in his 50's and lives with his elderly mother (her choice).  We live about 150 miles away. As anyone who has ever done long distance caretaking knows....it can be an adventure.
 
The time is approaching (and we hope it is later, but it may well be sooner) when my mother in law will no longer be able to care for her son.  These past few months, my husband, the oldest of his siblings, has been going through the legal process of applying for guardianship of his brother.  It has not been an easy process and I have blogged about it on several occasions.  (As of today, his petition is still before the court.)

If there was one thing I would ask for the parents of a child with autism - it would be to plan for the child's future.  This wasn't done with my brother in law, for a number of reasons, and my husband and his other "atypical" siblings have reaped that particular harvest.

My brother in law can be hard to get to know.  He speaks in a monotone, avoids eye contact, and will mainly talk about things that interest him - the New York Mets, the weather, and sometimes, even politics. He didn't talk until he was five years old. He can't sustain conversations for long.  He tends to be very anxious.   But he has abilities that are amazing - for example, being able to remember the weather of almost every day of his life.  And, he has a built in calendar. Ask him, for example, what day Easter will be in 2030 and he will tell you almost instantly.

One thing is for certain when you have a loved one with a developmental disability.  Life is never dull. There is a constant learning process, a constant advocacy process.  And you learn a lot of things:  patience, the need to be assertive without being aggressive, the need to network and make contacts. And, to keep on top of things.  (We don't always do so well on the latter.)

Is there someone with autism in your life?

(This post, incidentally, is my 1600th published post.  And, later this month, I celebrate my fifth blogging anniversary.  Should I do something special? Hmmm....)

5 comments:

  1. I hope your husband's application is granted and that your brother-in-law continues to receive the loving care he deserves.

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  2. I've heard the effect of autism does not have any friends in their childhood.. They must be guided by the family members.

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  3. I know a little about Autism as my older sister has Angelman's syndrome which when she was born was unknown. So when she didn't develop correctly she was tested for Autism amongst many other things. ALl of which was negative. It was only in the 90's was she diagnosed with Angleman's. Thanks for sharing this, it is good to raise awareness. Thank YOU!

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  4. I have coworker whose son is autistic. She didn't know, though suspected, till she had her second son. Then she knew there was something definitely amiss with her eldest by comparison. I sympathize with her struggles. She is very brave and determined that he WILL grow up and learn at least to take care of himself.

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  5. Gosh- I hope that your applications are granted. I can't even begin to imagine your daily challenges.

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