Lack of control over others’ ignorant behavior can lead to frustration which can escalate to anger which will be viewed with intolerance over which the initial actor has a lack of control which begins the whole vicious cycle again.
Read it again.
It is what I believe is happening every day in the world of educating people about autism. Autism Awareness Month is April. People are distraught over who is and who is not covering it. People are distraught over how autistic families are viewed when they push people to cover it and the way in which it should be covered because it makes us “look” bad. People are trying to reach goals and unveil great things in April.
The White House is not “lighting up blue” and there is controversy over whether this is because Autism Speaks is spearheading this awareness campaign. Some are angry that the White House would decline when the Empire State Building and Sydney Opera House, among other worldwide locations, will be using blue light bulbs to light up famous landmarks to raise awareness.
There is controversy because Parents’ Magazine did not give any space in its April issue of the physical version of the magazine to promote Autism Awareness. After parents of children with autism posted to the magazine’s facebook page, the magazine offered to post stories of autistic families on a blog through them. Many families are offering stories. Others are outraged that autism has been marginalized this way. Some are angry, marginalized but still submitting to the blog. Parents’ Magazine has a paid circulation rate of about 2,000,000. I have no idea what the view rate will be for this blog other than other parents of autistic children.
The issues are all about a lack of control. We cannot control who will help spread awareness, how it will be done, and who will foster ignorance. If we cannot control the spreading of the word then we get frustrated. If we get really frustrated we get angry. The anger shows in our responses publicly and those who view us may see us with intolerance which simply breeds more ignorance.
There may be several ways to break that cycle. The best way? Don’t ignore ignorance. But instead of anger over not controlling what others do, do for yourself. Not just in Autism Awareness Month – a mere 30 days arbitrarily chosen but whenever an opportunity arises.
But if you chose this path, you should really chose this path. You cannot stand idly by when an opportunity to educate arises. Educating is not fun. It does not win you friends or invitations to parties. It does not make you popular. If done right, it will get you noticed. It will make you pushy. It might make you notorious. You might get hate mail. You might lose contacts (people you thought were friends). But you will make someone, somewhere, smarter even if they don’t like you anymore and even if they refuse to acknowledge it.
Here’s a tiny example. Someone I have known for years posts humorous remarks concerning her BART rides on Facebook from time to time. BART is Bay Area Regional Transit. It’s like a subway for California. Most of it is not underground but it’s basically a subway around the Bay Area. Her posts are very popular with her many followers. On Friday, this person, who I love dearly, posted something like this as her Facebook status:
“Regrettably, I am seated next to a man who is engaged in a number of repetitive behaviors including taking his pulse and sighing.”
There were three comments by about 8:30 a.m. to this post which I don’t really remember. They were from three different people. The way I remember it, it seemed to poke fun at the man, her circumstance and how unfortunate it was for the woman who posted to be faced with this circumstance.
I could not help myself. I typed the following:
“The man next to you appears to have a disability known as autism from what you have described.”
The next thing I knew, my comment disappeared. Then, I checked today and the entire status had been removed. I waited for some communication – an unfriend (which would have been a horrible blow to me because really and truly, I love this girl!), a message – nothing. Just a removal. My feeling is she must have felt bad and removed it because she is a nice girl.
I could have left it alone, ignored it. It was done in jest and meant no harm to people with ASD. The thought that this person may have autism – I’m sure – did not cross her mind when she posted. But this was an opportunity to educate. That could be my grown son sitting next to her someday. Maybe the guy did not have a disability. I doubt that – – but I could not leave it alone – even at the potential price of friendship.
Consider the statistics – but really think about them – we’ve heard them before:
- The average ASD prevalence was 9 per 1,000 for 8-year-olds in 2006 in the United States. That’s about 1 in 110 children.
- ASD prevalence was higher among boys than among girls, ranging from more than three to more than six boys for every girl with ASD.
- Boys: 7.3 per 1,000 (Florida) to 19.3 per 1,000 (Missouri)
- Girls: 1.0 per 1,000 (Florida) to 4.9 per 1,000 (Arizona)
These statistics were obtained from the U.S. Center for Disease Control website.
In 2010 the estimated population of children – just in the United States alone -from birth to age 5 was 22.5 million. The total estimate for 2010 of children ages birth to 17 years in the United States was 75.2 million.
Do the math. That is about half a million (500,000) children up to age 5 and about a million and a half of all children up to age 17 who have been diagnosed with ASD as of last year. In the United States alone. Through this blog, I have met people all around the world who have children with ASD, especially in the United Kingdom, Australia and Canada. I do not know the statistics there.
This is the message posted on the CDC website:
“CDC considers ASDs to be an urgent public health concern. Increased concern in the communities, continued demand for services, and reports estimating a prevalence of about 1 percent underscore the need for a coordinated and serious response to improve the lives of people with ASDs.”
One percent does not sound like a lot. Until you do the math. Shall we ignore a million and a half children in the U.S. alone? How many more worldwide? Or shall we fight for them? Educate for them. Advocate for them. Every day we get a chance – Autism Awareness Month or not. Makes no difference. Opportunity comes – educate. Opportunity does not come – don’t preach.
It’s a really awkward position to be in when you are a parent of a child with autism. You know people who don’t have kids, don’t have kids with disabilities, don’t have an interest in your kids with a disability but they are nice people. You were friends with them before the diagnosis and you want to maintain that friendship but it’s almost as if this steel wall drops down with the diagnosis and seals you off.
Some don’t know what to say. Some feign a passing interest and move on to the next topic. Some just don’t talk to you anymore. Those who do don’t bring it up and try to maintain a friendship without mentioning it because they aren’t interested. We want to say – hey! You don’t have to talk to me about autism to be my friend.
But the autism is always there. And like it or not, as parents, we have a duty to make the world a smarter place for our kids. Doing that will help prevent teasing, that can turn into bullying that can turn to resentment, real hate and possibly even crimes against people with disabilities. Of course, those escalations are mere possibilities that do not normally materialize. But we parents fear these things. They do happen. What kind of parents would we be if we did not risk the casual acquaintance or friendship to correct, to inform – to educate because it makes us uncomfortable?
So there it is. I’ll be lighting it up blue when the opportunity arises- not just for April – but for the rest of my life.