April 23, 2010

Lisa of The Little Reader shares for Autism Awareness Month

April is Autism Awareness Month and I am very excited that Lisa has agreed to share with us about her brother. Lisa is a blogger over at The Little Reader. Thanks so much, Lisa, for sharing today.


Where is your brother on the Autism spectrum?
My brother, Jun, is a 39 year old adult living with autism disorder, that is, at the extreme end of the autism spectrum.

When did you first notice the symptoms?
My parents noticed the symptoms when he was very young, maybe one or so, when he did not begin learning speech patterns and was having trouble functioning in social situations with other children.

What symptoms characterize your brother's situation?
When Jun was younger, there was a lot of repetitive behavior, temper tantrums, and potentially dangerous behaviors that eventually led my parents to seek professional help and group home placement. His condition necessitated more constant care than my parents were able (and possibly willing?) to handle and the home he is at is able to provide amazing support and care.

Which symptom(s) do you find easiest and also most challenging in handling?
Although it seems as though it would be challenging, the lack of verbal communication is surprisingly easy to overcome because Jun is able to communicate basic needs (food, bathroom, sleep, etc.) in sign language. The most challenging thing, for me, is the distance. My brother is in Florida and I am in Hawaii, so I don't get to see him very often at all. He is unable to travel, so the only time I see him is if I visit, and it's only for a couple hours at a time, due to the regulations of the home.

For my parents, I can imagine that the decision to move him to a group home was very difficult and emotionally challenging. I mean, it took them another 10 years to decide to have another child (me) because of the possibilities that remained for having another autistic child.
This was about 35 years ago now, so the resources and knowledge was vastly different and certainly had an impact on their decisions.

Does Jun work? If so, what type of job does he do? How does being autistic affect his ability to work? How does it affect his relationships with his boss and co-workers?
Jun has a job folding newspapers and inserts and he loves folding laundry, so he actually eagerly awaits laundry day and handles all of the folding for the 20 individuals in his group home. I wouldn't be surprised if it is the highlight of his week.

How does it affect you emotionally as a sister of a person with autism?
The hardest part emotionally, for me, was the fact that my grandmother and my mother, did not really acknowledge Jun as a part of the family. I just couldn't understand that, being just a child myself, but because of it, Jun didn't become a part of my life until I was an adult. When people would ask how many kids my mom had, she'd always say one. It was as if pretending that he didn't exist would make it true.

Here is an excerpt from my personal journal after my first visit with him in over a decade, back in 2005:


i can't explain the emotion that i feel about him, towards him. he is my brother and a stranger. yet he recognized me. he got excited when he saw me, took my hand and walked me around. i signed him out and we went for a walk around the facility, which is really an old neighborhood converted into a campus for the mentally and physically handicapped. i wanted to speak to him, understand him, but i can't. he laughed with me for no reason and that feeling of shared joy almost brought tears. i want to know my brother, but i don't even know where to begin. i don't know if an autistic mind is something i can even know or understand, but i will try.

It's five years later now and I have visited him several times since then, though not as many as I would have liked. Personally, I am proud of my brother and wish that he wasn't so far away so that I could visit more often. The smile that I get when I visit is enough to make me happy to call him my brother.


What is something you want others to know/understand about life with autism?
Although Jun is autistic and does not function in "normal" society, he is a very happy individual that does contribute to society. I think there is a misconception that there is no quality of life for individuals like my brother, but that just isn't true. Although he isn't high functioning and although there are challenges, he is a human being with a big heart and a big smile.


What resources do you recommend to people who want to learn more about autism spectrum disorders?
For books, I would suggest any of Temple Grandin's books. She has a great way of conveying what it is like to live with a spectrum disorder in a practical manner that's highly readable.

On the web, the Autism Society has a lot of great resources and information.

--
the little reader
http://thelittlereader.net


Thank you so much for sharing with us about your brother and what life with autism is really like. It is important that we understand past just the label of "autistic" or whatever the label happens to be in a situation. The first step is sharing and bringing awareness and you have done that today. Thank you so much for the strength to tell your story.

7 comments:

  1. thanks Rebecca for having me! i appreciate you taking the time out of your busy schedule to coordinate and host this.

    and if anyone has any questions or comments, i'm always open for discussion, so please don't hesitate to ask.

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  2. My 4-year-old son has Aspergers, so although he doesn't have the same range of symptoms as Jun it still causes a lot of problems for me.

    I didn't realise that it was Autism awareness month, but a greater awareness would be one of the biggest things I could hope for. Because my son has 'normal' appearance there is no way people can tell he had a disability and so I feel really embarrassed when my son has tantrums etc in public. People don't seem to understand that his lack of social skills is down to a condition and not just bad behaviour.

    I hope that more people learn about autism - thank you for helping to spread the word!

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  3. Thanks to Lisa for sharing this with us. I think that when Jun was a young man people did hide things like this more than they do now. I'm so glad it's changed somewhat. But I do realize we still have a ways to go.

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  4. Thank you Lisa for sharing about your brother, Jun. It helps us to be aware of those on the autism spectrum especially the difficulties of communication. It's good your brother can communicate needs through sign language and without a doubt contributes to his community in many ways. The love for your brother shows in your writing and concern for him. I hope you have opportunities to visit him.

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  5. This was a great post...I work with several students that are in different ranges of Autism and Asbergers...I love them all and their wonderful personalities!

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  6. my close friend has an autistic child,
    who i have taken care of many times.

    she is in turns charming and very
    frutrating, but incredible loved by her
    family and friends.

    she, too, loves to do repetitive chores.

    thank you for the dialogue.

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  7. Thanks, Lisa and Rebecca, for doing this great interview. I agree that Temple Grandin's work is terrific. She articulates things that no one else has put into words.

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