My sister, Lisa

By Lea (Chickadilly)

Recently I became aware that Daniel Radcliffe was involved with a DVD project entitled “Mind Reading: the Interactive Guide to Emotion" which has a cast of 30 actors demonstrating the facial expressions and vocalizations associated with 412 distinct emotions. This DVD was developed by the researchers at the University of Cambridge Autism Research Centre, as an educational tool, to help sufferers of Autism learn more about recognising human emotions and facial expressions.

Being such a big fan of Harry Potter, and Mr. Radcliffe as well, I was thrilled to find out about his contribution to this project, especially because my older sister, Lisa, suffers from Autism.

Autism, to quote the Autism Society of North America (ASA), “ is a complex developmental disability that affects an individual in the areas of social interaction and communication. Autism is a spectrum disorder that affects each individual differently and to varying degrees of severity. As many as 1.5 million Americans - children and adults - are thought to have autism today.” It is currently the development disorder with the highest increase in sufferers. According to the ASA, the increase in Autism in the 1990s was at 172%. This is a far cry from when I was growing up and my sister’s condition was deemed ‘very rare indeed.’

People have always asked what it was like growing up with a sister so "different" from the norm. It's hard for me to answer that, for I never knew any other way to grow up. Had I been the older sister, I could talk about what it was like before she came into my life. I could talk about how strange she might have seemed to me at first.

But, to me, she's not strange. She's just Lisa. She's always been there, a part of my life. Because of her I knew about autism before the majority of people in this world did. In fact, I can remember a speech I gave about it in high school and only one other person in the class knew anything about autism.

That was before the movie Rain Man came out. After it’s release I was suddenly comparing Lisa to Dustin Hoffman for everyone who asked. That character was based on a case study of an Autistic man living somewhere in West Virginia. Dustin Hoffman lived with the family for a while to study his behavior. But like all case studies, this was an individual. Not all people with Autism are savants like his character was.

Which was followed by a sudden "epidemic" of Autism. It's odd how prevalent it's become. When the family next door moved in two years ago we weren't shocked to find out they had an autistic child. Ten years ago it would have been a surprise. That scene in Rain Man where the nurse thought Tom Cruise was telling her that his brother was artistic rather than Autistic was very much on the mark for it happened all the time.

Because it has become so much more common, the research has come a long way in the past ten years. When Lisa was first diagnosed, while still a toddler my mother was informed it was her fault, as Freud had once made comment that autism was caused by maternal neglect. Modern research has proven Dr. Freud to be wrong; in fact all evidence concludes Autism is not a psychological condition at all. It is a physiological condition with psychological effect. There isn’t a known single cause for Autism, but it’s believed that it is caused by abnormalities in brain structure. When Lisa was much younger she participated in studies, conducted by Dr. Bernard Rimland that tested her brain wave patterns and biochemical activity.

It is because of these personal experiences, that when my good friend Tara approached me with an idea she had about raising money for Autism research in Daniel’s name for his birthday I offered to write a little about my sister. Even though Lisa is biologically an adult, she continues to be mentally and emotionally a little girl. I can only hope and pray that one day the research can find a breakthrough on the exact cause and cure for this condition and if someone like Daniel can help with that I am eternally grateful.

As for Lisa, she’s lucky in that she's highly functioning, meaning that she can and does dress herself, pretty much takes care of herself, and knows how to do household chores and that sort of thing. Some people with extreme autism can't do this. She’s also a highly creative girl; she loves to create things. In the past ten years she's made me about six blankets that she either knitted or crocheted. She's in the process of making me a Gryffindor scarf and she always has some sort of creative project going on.

Growing up with a sister such as Lisa was a challenge. My peers in high school did not understand why I was called into babysitting my older sister, and often missed after school activities because of it. There were times I confronted jealousy that she got all the parental attention, as there were times I was frustrated by the lack of communication I had with Lisa. I sometimes also wondered if anyone could understand the special concerns I had about Lisa’s future as well as my own, concerns I still face, actually. Despite all of this, however, I am very grateful that Lisa is part of my life. Through her I learned acceptance of others who are different at a very young age. I learned patience, responsibility and unconditional love from her as well.

I love my sister.
***

Some Links
http://www.human-emotions.com/mindreading/default.asp ß- link to the DVD
http://www.nas.org.uk/peoplew/personal/index.html <-- links of people’s personal experiences with Autistic relatives and other loved ones.
http://www.autism-society.org ß- Autism Society of North America
http://www.autismresearchcentre.com/arc/default.asp ß- a British research organization.
http://www.nas.org.uk/ ß- National Autism Society. (U.K.)
http://autism.com/ari/ ß- Dr. Rimland’s organization

*Note=portions of this came from a Live Journal entry posted on Jan. 15, 2003