Wednesday, April 2, 2014

World Autism Day 2014

I have to be completely honest with you, today wasn't a day in which I felt like celebrating. One of my first thoughts this morning was of the date, April 2, and knowing that is was World Autism Day but with the announcement last week of the current Autism rate... I just didn't feel like participating. What is the point? I've been spreading awareness now for 11 years, I've been trying to educate and advocate and in the end I just feel tired and voiceless. I mean, is anyone out there? Are they listening? Do they care?

My day went in waves of highs and lows, seeing a few friends who had both good and bad news about their own ASD family and watching my Facebook feed light up with all kinds of Autism posts also both good and bad. The Light it Up in Blue debate started bright and early with posts about why certain non-profits are evil and the vaccine debate got kicked up by a measles outbreak somewhere. As an Autism parent of 11 years I found myself being careful of what I say and tip-toeing around the "hot topics" to make sure I do not offend fellow ASD parents. I have to say, I did not appreciate this at all. So rather than sitting on the side lines and attempting not to offend anyone, I'm just going to throw myself out there, say what I want and let the chips fall where they may.

I don't love Autism Speaks either but you have to admire a business model that has the world lighting things up in blue and who has such household recognition that when people "want to do something about Autism" they write their checks to Autism Speaks first.  Do I like it? NO. Is that the current state of Autism charities right now? YES. I'm not going to hide the hat I got in the first walk after Autism Speaks took over for Walk FAR for NAAR. I walked in that heat and I didn't understand my kid that well and it all kinda sucked and I earned that damned hat so I'm going to wear it! But I'm not going to send them my money and I'm not going to put a blue bulb in my front porch light and here's why:

  • I don't have any money to donate. The idea of sending donation requests to the people who would be applying for grants and access funds from the same charity is absurd. If I had an extra $50 to send you then I wouldn't have spent an extra hour on the phone yesterday with my insurance company fighting over the $50 that they failed to apply to my out-of-network deductible. Stop sending me donation requests.
  • I don't have time to change the bulb in my light. Seriously, that would involve the ladder we have hidden from 2 curious boys and climbing and removing some complicated glass covered thing to switch out the bulb then replace the glass thing and hide the ladder again. Then I have to do it all over again the next night or risk looking the the schmuck who forgot to change the bulb back for months and months not realizing it was blue until Christmas. Um. Yeah. So that happened. Moving on... 
Here's my take on Autism Speaks. It's like fighting the pharmaceutical company or the insurance company, you probably aren't going to win but feel free to fight the fight. I mean, it can't hurt. For me, personally, I'm just going to use them. I know I'm not going to donate any money to them but I will follow them on social media, read their webpage and take the only thing they are offering me... information. I'll share it too and I won't feel bad about it. I'm going to ignore all the slanted crap and all the stuff that implies my kids are defective and I'm going to read the current research that is available. If nothing else, it's an okay clearing house for a lot of the other stuff floating around the internet. (*If you never listen to another thing I say, hear this: Do NOT just Google Autism! Just take my advice and don't do it.*)

In similar regard, I also sift through all the other side of Autism research with cures and snake oil and I take the information that is pertinent and necessary to our own journey. Keeping in mind always, Do No Harm and the old adage that "if it sounds too good to be true, it probably is." Let us not forget that our children are unique, under the same spectrum, but unique. You cannot follow someone else's path and expect the exact same results. Results may vary. 

Vaccines... sigh... I really wish everyone would just shut up about them. Until every single person in the country does a blood draw for titer levels that correspond with the vaccines they do or do not receive, I really don't want to hear about it.  Bottom line, ask any doctor or scientist... no vaccine is 100% effective. The **ONLY** way to know if you are immune to a virus is to check your titer level to make sure you have enough antibodies to be immune. Kids who are fully vaccinated are catching the measles, kids who are not fully vaccinated are catching the measles. The answer is not more shots, it's actually checking to make sure the shots are effective (*insert conspiracy theory here because I'm not going to*). 

Those are the biggies on my news feed today... here's some final thoughts.

It's super cool to see major landmarks bathed in blue light and know that it is for my kids. 

I question whether or not Awareness is still necessary and then someone in the grocery store tries to explain to me that kids should be "beat until they behave" and I realize there is still so far to go. 

Obama Issues World Autism Awareness Day Proclamation I think this is kinda cool, thanks President Obama. I considered it a "win" when you even said the word Autism during the presidential debates and I appreciate this follow-up. 

National Autism Association  is doing some great stuff to promote safety and wandering prevention, so much so that even Autism Speaks have started jumping on the bandwagon. NAA's Big Red Safety Box and Project Lifesaver are saving lives every single day. 

The Autistic Self Advocacy Network has the best slogan ever, Nothing About Us Without Us. I like their purpose and their goals and they are getting stuff done. If you haven't heard about them, you have now. When you reach the point of accepting and understanding the diagnosis, you then will turn to the future and this group is actively working for your future now. 

If you have someone who wants to donate to an organization or if you have extra funds and wish to donate, don't just follow the leader and consider other organizations like the ones above or local organizations. 

I have a difficult time with Autism Awareness Month, I appreciate all of the awareness, action and information that happens this month but guess what? May is also Autism Awareness Month for us, so is June, July, August... the blue lights will go away but Autism will stay and before you think that is a negative, it is not. When I look back at the last week, it was quite frustrating. When I look back on the last month, it was quite interesting. When I look back at the last year, there was progress. When I look back at the last 10 years, it has been extraordinary. I am in awe, not of Autism Speaks or blue buildings, not of vaccine debates and placing blame. I am in awe of two (no so) little boys who have changed the world just by existing and I get to be their Mom. 


  1. Thanks for the feedback! It keeps me going when I'm blocked (like today, a week after World Autism Day).