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