Lighting Up Blue While Seeing Red.

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:

In 2006:

  • 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.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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30 Responses to Lighting Up Blue While Seeing Red.

  1. Heather says:

    Beautiful post and so true. 1 percent is a huge number of our population and as this generation moves on to adulthood our nation is going to be seeing a whole different type of crisis. Sometimes I think I may come off as annoying when I advocate, but if opportunity knocks we have to rise to meet it every time…for my son’s future, for your son’s future, for the future of all the individuals on the spectrum.

  2. jnettlee says:

    In just the short time span (not quite 2 mos.) since we received Gavin’s official dx., I can honestly say that my daughter and I have experienced PRECISELY what you have written here !!! Undeniably so. And blatantly so. I experience it daily at work. It’s as though suddenly I have leprosy or something. And this is coming form nurses, no less! So disappointing 😦

    My daughter’s “friends” suddenly are nowhere to be found… online or off.

    I agree… awareness/understanding education should be practiced year round, not just in April, much as love should be practiced daily and year round, not just on Valentine’s Day.

    Good post ! 🙂

    • solodialogue says:

      Yes, it’s funny how fair-weathered some “friends” can be. Until you really face something big though, you never know. And then you find a whole new set of friends that get you through it! Thanks Jeanette!

  3. My daughter is not on the spectrum, but her sensory processing difficulties and her language disability result in many of the same behaviors seen in a person diagnosed with autism. It is times like this that I am jealous for your diagnosis… more precisely, I am jealous of the community behind the ASD diagnosis.

    I too, take time to educate when possible… but when you’re trying to educate for a diagnosis that isn’t even officially a diagnosis, things get frustrating… and then you get angry… and then… well, you know 😉

    I’m glad you’re doing this, Karen. You’re an active part of your community and I really am proud to know you. And who knows… Maybe some of the Autism awareness will brush off on those battling SPD.

    For my part, I’ll be looking for a few blue light bulbs at the hardware store this week 🙂

    • Jenny says:

      Hi, Karla,
      I am sorry for your frustration. I can totally understand what you are saying. Hang in there, and we’ll be your friends! 🙂

    • solodialogue says:

      There is absolutely nothing to be jealous of because you are part of this community. I do know you must have some exasperation stemming from the lack of a precise diagnosis but this is all to Kaia’s benefit which you will see as she grows with you to help her along the way. Thank you for your kind words. Glad you are getting the bulbs too! I’m about to go door to door selling them!! Ha! That would give me some blog material, now wouldn’t it? 😉

    • Cara says:

      I’m sure you already know, but Home Depot has light bulbs that donate $1 of the $1.65 price to Autism Speaks! I have mine up already! 🙂

  4. I am so with YOU. I’d rather be proactive than angry.

  5. Jenny says:

    Very well said. Reminds me of a comment a friend left on my blog last year when someone blasted me because I put a link to Autism Speaks’ 100 days kit for people who needed information. She commented that there are so few medical issues where you see such a division “among the ranks”. Additionally, because our kids have “invisible” disabilities (SPD included, Karla) we get ignored.

    It is also funny that you post this because I have been mentally preparing myself for nasty comments on my blog in April. A week or two ago someone left a comment telling me they were “disheartened” that I was “building a platform on [my] son’s disability.” I figured it was someone from the other side of the country I didn’t know. Looks like they live within 5 miles of me according to statcounter.com, and that means I may very well know them. That saddened me.

    Thank you for your great articulation. I don’t have that ability any more! Fibromyalgia (mine), childbirth, and autism (my son’s) have kind of fried my brain. Good job!

    • solodialogue says:

      I cannot believe someone said you were building a platform on your son’s disability!! I am so sorry that was said to you. People are ignorant and cruel in that ignorance which is why autism awareness is so important. But even with the awareness, there are some people to whom we will never get through. Fibromyalgia is difficult but you sound quite articulate to me! Thanks for your kind words.

  6. Susan says:

    What a great post! My son has high functioning autism and is doing really well at the moment, but I can still remember the days of walking along the street and him shouting “idiot” etc at me because he couldn’t cope with his surroundings, or kicking and punching me in the supermarket as we had been there too long. I remember the looks and the comments from people who thought he was just a spoilt little boy having a tantrum and I was letting him off with it. Now I always tell people not to judge, that the child who is screaming and kicking may have problems that aren’t apparent. Before I had my son, I was sometimes one of those judgemental people, not through nastiness, but through ignorance. The more people are made aware of autism, hopefully the better this world will be for our children and theirs. xxx

    • solodialogue says:

      I completely understand where you are coming from with those looks and comments. There are many people who believe our children are merely spoiled and getting away with things and that is what autism is all about. I’m so glad you are open to telling people not to judge. I agree that the more people who are aware, the better chance our children have. Thanks Susan.

  7. Lisa says:

    I wish I could stick a blue light bulb in the mouth of every idiot we all encountered in our autism journey, I’m pretty sure we’d be lighting up a lot.

    That’s why I love blogging and twitter, so many stories shared, thoughts and questions and answers.

  8. Lizbeth says:

    It’s a journey to be sure. I’m amazed at the number of friends that have dropped off the radar as I’ve become more proactive for my son and those who don’t want to be bothered by our additional baggage. Fair enough, but don’t take pot shots at those who can’t defend themselves, such as my son and the man you described on the bus—that’s exactly why I’ve gotten a bigger mouth and have found myself using it more often than not!

    Karen–on a unrelated note I’ve tagged you on a cute Meme if you’ve not already been nabbed. Come over and see–L

    • solodialogue says:

      Love it Lizbeth! I’ve got a big mouth too, sister!! For each person that has dropped out of the picture, I have found someone like you to share the battle every day. Your words and thoughts mean more to me than water cooler humor and politics…

      I will be by to see what you are up to…

  9. Great post, with wonderful perspective. You are right, educating and advocating is life long, not month long. BTW have you thought about sending this post to your local newspaper, or television? It speaks very well of our Autism Community.

  10. Deanne says:

    Amen. I have developed a standard spiel. 😉 Sometimes I feel great and can launch into it, sometimes I feel crappy and have to force myself. But there’s two things I want people to walk away understanding – that my children are autistic and that their autism doesn’t define them. People at work ask me often how the boys are – if they know me well then I tell them about the boys just starting IBI, explain what IBI is if they don’t know and then also tell them about the boys’ current love affair with Bolt (the movie), show them pictures. Then I ask about their kids, or their cats or whatever. I want it to seem perfectly normal to talk about, I want people to know that I’m not ashamed of either my children, or the challenges we face. There are people I’ve known for a long time but don’t see very often – with them I always start with a ‘can’t remember if you know that Owen and Oliver are autistic?’ comment. The standard response is ‘oh I’m sorry to hear that’ which is perfect as it allows me to say – don’t be, it’s damn hard, but it’s the most rewarding thing that’s ever happened to me.
    We have a volunteer day at work in September and I’m hopefully going to be leading a group of people from work in a project at the Geneva Centre for Autism. They’ll get a mini-lecture over lunch. 😉 Jim Martin suggested to me recently that I do lunch and learn sessions after tax season is over which I think is a great idea.
    Anyway, I guess this is a really verbose way of saying ‘I agree’ but I think it’s so important that we talk to people about our children because we’re the real experts when it comes to our kids – talk about how wonderful and special and fabulous they are, and where they need support. How else will people know?

    • solodialogue says:

      You are so beyond ready for a blog. I love your standard spiel! You are amazing to be leading a group from work and the idea of a lunch and learn is a great one! You are right! How else will people know? It’s been said many times but knowledge is power! Thanks Deanne!

  11. Danica says:

    I find myself educating people everywhere I go. I have had people give me disapproving looks and comments in line because my Patty dose or says inappropriate things. I use it to educate them. I will start up a conversation with them. It is not always welcome, but I try to make them understand that their look or comment was unjust and let them know why.
    In recent years, I have found myself having to educate people & Dr’s about my own disease as well, because it is so rare. I now help run a support group for newly diagnosed people and also on the Board of Directors. I have learned the key to spreading awareness is not by leaving it up to the big organizations, but by our own involvement and the time we take out of our own lives to bring awareness to these things. We cannot expect the rest of the world to do it for us. This is why I take any chance I get to talk to people about my daughters disability. I think anything we can do will help the greater good. Eventually we will spread awareness to the world, and gain acceptance for our kids.
    Of course I will be buying all the blue bulbs I can get my hands on and giving them to friends and people I come across. I also have another project I am working on.
    Thank you for posting this and for your fabulous blog. I think you are a wonderful mom, daughter and all around fabulous person 🙂

  12. eof737 says:

    You covered a lot of ground here and I think you should reach out to your friend and help her understand how seemingly innocuous remarks can be painful for a parent. Education is key; the more we are educated about those sensitive areas, the more we know to be more conscientious. 🙂
    Every day I come here, I get a glimpse, I learn something about your son, you, and the world around him.
    Eliz

  13. Kelly says:

    To echo the above sentiment, you are doing a great service for our community. I thank you for that.

    My goal was never to teach others, but only advocate for my son. Soon, I found out that I couldn’t do one without the other. Even the photographer who did our family photos received a crash course in autism!

    I am always very careful, though, to mis-quote Temple by saying, “When you meet one person with autism, you have met One Person with autism.” The way my son presents as a child with autism will be completely different from the next child with autism someone meets.

    We don’t have outside lights in the Crumbling Colonial, but the whole family has T-Shirts for LIUB. And we now have the autism awareness magnets on our cars. We are ready and willing to do our part! I wish Obama and those in Congress would do theirs. More Funding, More Resources, More Education, More Hope.

  14. Wonderful post! It can be a friendship cull for some, game-changer for others, and created or strengthened other friendships. Perhaps it is because I have changed, some relationships have to as well. Just like Kelly (above) says, when you advocate, it is for all our children, and adults too.
    I hope you manage to open a dialogue with your Facebook friend. I’ve been amazed at the number of people who have wanted to find out more once I started talking. It made me regret my initial silence.

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