April – Autism Awareness Month
April 2, 2016 – World Autism Awareness Day
“Light It Up Blue”
On April 2nd in commemoration of the United Nations-sanctioned World Autism Awareness Day, people are being encouraged to “Light it up Blue.” They will be joining people across the world who will be wearing blue in honor of the millions of individuals and families affected by autism. Some international landmarks will be joining in this global initiative by physically being lit with blue lights. Perhaps you’ll see houses and businesses in your local area that will do so as well.
Autism really struck home for me in a personal way this year. Someone very close to me was finally diagnosed at 16 ½ years of age as having autism. Well, to be honest, a couple of years ago he was diagnosed with one thing and then another. I’ll call him “Marcus” for obvious privacy purposes.
Marcus has always been highly intelligent. I mean he’s scary smart. But I had heard he was having trouble communicating with his peers at times. I’m not in a situation to be able to experience it firsthand, though. I remember having a conversation with him about soccer and about how the coaches wondered why he didn’t say much during the games. He was a great player – but he just never said anything. I honestly just chalked it up to him being shy and awkward around his peers.
My own personal experience with him was that we could talk about anything and everything. I mean sometimes our conversation was stilted – but I thought that was just because he was a teenaged boy. He loved talking about video games and was so danged great at Call of Duty, that the friends of his college-aged sisters knew his gamertag and were super impressed at his elite ranking accomplishments. We usually talked about things I thought he would be interested in… I had no idea that he was having difficulties communicating beyond those subjects.
The few times when we would talk about my work as an analyst and grantwriter, he would ask really great questions that demonstrated he understood the basic dynamics of the project I happened to be working on at the time. He is so danged smart and I see so much potential in him… It’s really quite amazing. I love and savor those conversations.
However, Marcus’ life has been a living hell for about the last 4 years. His actions have been completely misunderstood and his words have been sorely misconstrued. He has been ostracized and criticized both by his peers and those in the educational community and beyond who should know better. Contrary to their belief, he was not a teenager who was just acting out. He is a teenager who happens to have a mild level of autism.
Knowing that something was a little bit different with him, Marcus’ parents had been begging for years to have him professionally tested using more than the most basic psychological tests. I guess the decisionmakers thought he wasn’t symptomatic enough to warrant earlier testing.
He finally took a neuropsychological test the results of which demonstrated that he has Level 1 bordering on Level 2 autism. You would think someone would have figured this out long before this time – I mean it’s not like they hadn’t already consulted a million experts or anything.
In the midst of all of this, Marcus had the misfortune of a mean girl crossing his into his path of existence. This girl seemed to have nothing better to do than to cause him irreparable harm on so many levels it makes my head spin. She made up crap about him at every turn even though there is concrete evidence that proves the exact opposite of what she said. She was caught in several lies but none of that seemed to matter. Did I mention her parents were part of the educational system? Marcus didn’t have a chance…
I’m not even going to talk about the impact that the girl’s social media rantings caused him. It broke my heart. Even changing high schools didn’t help any. She, and then her parents, seemed out to ruin his life. Being successful in school was next to impossible for Marcus. I was told that the girl had been in love with Marcus in Jr. High but he never responded to her like she wanted. Then, in high school, after she broke up with her boyfriend, she suddenly had a lot of extra free time on her hands that she could use to ruin Marcus’ life.
Currently, Marcus’ parents are exhausting every available mechanism to ensure his educational success while securing his continuing protection. After dealing with principals and vice-principals and everyone in between, they are just now finally connected to a district expert who is working with them towards his successful completion of high school. I mean it’s not like he’s supposed to graduate in less than 3 months or anything.
Without going into the gory details, Marcus’ life has been shaken to the core. He doesn’t understand why he is different or why all of this is happening to him. He wants to be able to do everything other kids his age do – but he can’t. He just can’t.
In class, it’s no surprise that he recently didn’t finish a project because part of the assignment on the board was that when he finished he would have to make a presentation in class. So he decided not to do the project because you can’t make a presentation in front of the class on something you haven’t done, right? His teacher said she never intended Marcus to have to make a presentation… and that she verbally told him so – but Marcus’ brain works best with tangible visual queues so he connects best with concrete written instructions.
If that change in instructions had been written down, he likely would have clearly understood what he was responsible to do and not to do. It’s these nuances that while they seem so simplistic to you and me – they could really make life easier on Marcus. But people need to learn how to work with people who happen to be autistic – no matter what level of autism they have.
Marcus’ parents have a steep learning curve especially because Marcus is at such a pivotal juncture in life. They’re trying to learn as much as they can in a short amount of time. But it’s tough… it’s really, really tough. They need all the help and support they can get. There are lots of questions…
April – Autism Awareness Month
April 2nd – World Autism Awareness Day
Why “Light It Up Blue?”
Please Note: I shamelessly grabbed some stats from Namaste’s FB page and followed them with my own editorial comments…
We should “Light It Up Blue” because…
- 1 in 68 children are diagnosed with autism (As staggering as that statistic is – it’s still low because of all of those who have autism, but who aren’t yet diagnosed – For example, last year Marcus wouldn’t have been included in this statistic even though he had autism because he was yet to be diagnosed…)
- Children and adults with autism NEED you to know they are important and worthwhile (Of course they are – but I don’t know that I let them know that enough)
- The life expectancy of those with autism is 20 years less than the average due to suicide (Yikes!)
- You likely know someone with autism (I’ve known several – although, unfortunately, I know very little about autism)
- There are moms and dads who are heartbroken today who need hope (They likely won’t seek you out about it, though… We need to reach out to them)
- Autism statistics show a 10-fold increase in the prevalence of autism over the last 40 years (Something has changed… What is it? We need more research!)
- Studies also show that autism is four to five times more common among boys than girls (Why is that??? Again, we need more research!)
- More children will be diagnosed with autism this year than with AIDS, diabetes & cancer COMBINED (Yikes!)
- Autism is the fastest-growing serious developmental disability in the U.S. (Wow)
- Autism costs a family $60,000 a year on average (Holy crap on a cracker!)
- Autism receives less than 5% of the research funding of many less prevalent childhood diseases (Huh? That doesn’t even make sense… This needs to change!)
- There is no medical detection or cure for autism (Sigh…)
Please join in! LIGHT IT UP BLUE! Really, it’s the least we can do, no?