It's Autism Awareness Month and the statistics being what they are (1 in 110 children are diagnosed with an Autism Spectrum disorder) we are bound to have someone in our family or among our friends dealing with this diagnosis. My cousin Susie found out her son had Asperger's Syndrome when he was in first grade. She has been gracious enough to share her awareness story and how a TV show helped her son understand his diagnosis.
Since it's Autism Awareness month and I began writing this on World Autism Awareness Day, I feel a need to make people aware. Actually, I feel the need everyday. The most important facet of our awareness was our 11 year on son's. He has Asperger's Syndrome (AS). Basically..it's similar to a high functioning form of Autism. With Asperger's there usually is no delay at all in the acquisition of language, or a very minor delay at most, otherwise Asperger's kids have similar traits of kids on the Autistic Spectrum (and it's a WIDE range, hence the "spectrum" term)
- a tendency toward ritualistic,repetitive and compulsive behavior
- resistance to change
- restricted (bordering on obsessive) interests
- impaired social interaction capabilities
- Sensory sensitivities (could be either touch,sight,sounds,smells,taste--varies)
The level to which each of these things are manifested, and how they affect an individual's independence, however, are totally unique to the individual.
As stated above, a trait of AS kids is OBSESSIVE interests. Brett has gone through many and, unfortunately, they typically aren't what other kids are into, which adds another obstacle to the already unnavigable world of social interactions (composers, in 1st grade..need I say more). He has had a VERY strong interest in GAME SHOWS and a some REALITY TV shows for the past few years. We give in to these obsessions. We join him in his interests. We invite others to join in as well. We try to expand on his strengths with his obsessions. For example, he loves The Amazing Race. We have held our own Amazing Race, created almost entirely by Brett, for the past 2 years. We invite a about 5 families and do our own Amazing Race. This way, he's doing what he loves but he also has to socialize and use some practical life skills, neither of which come naturally to AS kids. The Amazing Race also was the key to Brett's own Autism awareness.
On September 27, 2009 The Amazing Race Season 15 began. As always, we were all in our places ready to watch. They began to introduce the teams. Right before our eyes was a team, Zev and Justin, one of them with Asperger's. As Zev talked about himself. I nonchalantly looked at Brett to see if anything he had said registered. Nope. By the end of the episode, I was so impressed with these two and they were Brett's favorite team (cause they were cool, funny & smart). I am not one to write fan mail, but something inside me said write to them..get their help..ask for advice.
I sent them a little note, via their website. I just told them how I hoped one day my son with AS would have a friendship like they had and I asked ZEV, the one w/ AS, if finding out he had AS at age 11 helped or hurt him. Not only did they write me back, they gave me words of wisdom that changed our life. Justin replied and said that Zev told him it helped because he already knew he was different, but now he knew why. He also said that knowing didn't change him that much because it is just a part of him, not his entire identity. They gave us other morsels of wisdom too.
Well, I told Brett that I was in touch with Zev and Justin. He wanted to see what they wrote. I told him that before I showed him,I wanted him to think about Zev and what they had in common. He told me he and Zev both like scavenger hunts and have trouble with social situations. He made the connection. It was HUGE. He said, "I have ASPERGERS?!". Then he asked, "is that why i do this, and that....". I said yes. He was so happy. There was a reason for some of his "quirky" behaviors and there were others who are similar to him. He looked at me and said something so profound. He said, ","it's like I was trying to do a 1,000 piece puzzle and was missing a piece and you just gave me the last piece". How's that for awareness! We remain in touch with them and are so fortunate that our paths crossed.
I could go on and on but my point was Autism Awareness and now you know about our path to Awareness (well ,a fraction of it). I am so grateful that we live in a time where my son can get a variety of therapies, see people like himself on tv (TAR15,The Middle, Parenthood and on Arthur TODAY!!) and read books with kids "on the spectrum " as main characters. I have found support online,on meetup.com, on Twitter, through word of mouth & from other parents who have walked the same path. Currently 1 in 110 kids are diagnosed with an Autism Spectrum Disorder. Well, untill we can find a cure, we can get the word out, support each other and learn.
Besides Zev & Justin, here are some of great Austism Resources.
1.Anything by Dr. Temple Grandin. The HBO movie http://www.hbo.com/movies/temple-grandin/index.html with Claire Danes is a MUST SEE. (also HBO is now showing a very moving and informative documentary about Ausitm, http://www.amotherscourage.org/
2. A great organization that Is doing AMAZING things to spread AWARENESS -Autism Speaks http://www.autismspeaks.org/ They provide toolkits for Austism, Aspergers and so much information. We are doing the Walk Now for Autism Speaks on May 15th!
2. A great organization that Is doing AMAZING things to spread AWARENESS -Autism Speaks http://www.autismspeaks.org/ They provide toolkits for Austism, Aspergers and so much information. We are doing the Walk Now for Autism Speaks on May 15th!
Do you have an awareness story? Do you have questions? Thanks for reading & for giving me this opportunity to share this part of our story.
This is truly an amazing story. Thank-you for sharing. Thank-you for the link to the Temple Grandin film. It is a must see!
Thank you for sharing your story with us, Susie! It was really amazing to read about your little boy's awareness of his condition.