Why I Won't Be Lighting Up Blue for Autism
@Ruby3881 (1963)
Canada
April 2, 2016 3:13pm CST
My son was born with moderate to severe autism, mental retardation and ADHD. He has struggled with sensory integration disorder, communication deficits, and compulsive behaviours severe enough that his teachers found them disruptive.
My autistic son is also bright, witty, talented, loving, and a joy to be around. It irks me when people focus more on his disabilities than on his charming personality or his abilities.
And that is one of the major reasons I won't be lighting anything up blue - today or any other day. Nor will I be wearing blue, or anything along those lines. To be honest, I find the whole blue light campaign rather offensive.
The campaign is run by Autism Speaks, a group that now markets special light bulbs for the purpose and has even attempted to bully the White House into participation in their publicity stunt.
But blue isn't associated with autism. The icon of autism is the puzzle piece, because autism remains so much a mystery despite decades of research.
And Autism Speaks is best known for paying 6-figure salaries, fear mongering, and excluding actual autistic people from any opportunity to actually speak. It's all over the internet, so I won't bother to get into the data here.
Let's just say that a very significant number of people distrust and dislike this organization, and there are far better places we could suggest you donate your charitable dollars. I will start you off with the ASD CARC, a group of 50 researchers in Canada and the US who collaborate and share data. I have personal experience with this group, and can't recommend them highly enough. They're fabulous, warm-hearted people who really are getting things done.
http://www.asdcarc.com/
And if you want to do something today to help you relate to people who live with autism, please take a couple of minutes to watch this video. Next time you're out in public and you see a parent struggling with a child like this, remember the video. We parents who have had to cope with a child's tantrums and sensory overload need your understanding and support - not to be told our children are naughty or that we are bad parents....
https://www.youtube.com/watch?v=Lr4_dOorquQ
8 people like this
8 responses
@TiarasOceanView (70035)
• United States
2 Apr 16
I can understand why you wouldn´t be enthused about that blue rip off thing.
How bad of that organization to be like that excluding the very people they claim to be helping.
Oh my so glad you have exposed this here. They are a disgrace and should not be allowed to operate.
I had no idea. Often people don´t.
Yes, it is something for all to think about, when out and see a parent struggling with a child..I get that totally.
My son is not autistic but has always had the ADHD and other undiagnosed illnesses.
I know what looks I used to get ..
Not that I care what anyone thinks but people should consider a lot more than they do..
Always try to walk in the others shoes.
1 person likes this
@TiarasOceanView (70035)
• United States
2 Apr 16
@Ruby3881 Whew thanks Kyla..it is so hard even today as he is grown.
1 person likes this
@Ruby3881 (1963)
• Canada
2 Apr 16
@TiarasOceanView My son turns 17 this year, and my oldest daughter will be 19. She's a lot more capable than he is in terms of daily life, but it still takes patience (for her and me!) Some days I just want to pull my hair out, and I think so does she.
1 person likes this
@ScribbledAdNauseum (104630)
• United States
2 Apr 16
I know two people with autism, think my nephew could be autistic, and have a lady who works where I do that has a son who is autistic.
She took him out of school because the teachers weren't understanding and even took a ruler to him when he was having a breakdown.
I've never seen the blue light, only the puzzle pieces to give awareness to Autism.
1 person likes this
@ScribbledAdNauseum (104630)
• United States
2 Apr 16
@Ruby3881 I had actually forgotten about a friend who I went to school with and lived with for a few years. We recently found out he is autistic, something he never told us until recently.
It disgusts me how supposed charity organizations for different things can be so greedy. Instead of focusing on the intent of the organization itself they focus on lining their pockets and getting a good tax write off. It makes it very difficult to find an organization whose focus is to raise awareness and / or find cures.
1 person likes this
@Ruby3881 (1963)
• Canada
2 Apr 16
You probably know a lot more autistic people than you think, as there are anywhere from 1 in 250 to 1 in 68 people on the autism spectrum. Not everyone is as obvious as my son, though....
We are very fortunate to have a fabulous special education team here. My Bug's teacher is a lovely, patient, humorous man who truly loves the kids he teaches. And we always have some really special ladies and gents among the teaching assistants. They are great with the kids.
Yes, the puzzle piece is a well known symbol of autism. I can't see any connection at all with a blue light. I think it was just a marketing ploy. They probably just decided that red and yellow already had other associations, but blue was not really assigned and makes people feel good. Autism Speaks pays a lot of folks for PR and related tasks. They spend hundreds of thousands of dollars on that sort of thing, in just a single year.
@Ruby3881 (1963)
• Canada
2 Apr 16
@ScribbledAdNauseum Well, the research group I linked to above is a great place for anyone who wants to donate money or volunteer to help with research (they're always looking for autistic people and their families to complete surveys or otherwise assist them in gathering more data about autism.) They really do help people. I know they helped us when our youngest was born, and we worried she might also have autism. They followed her for two years, to be sure she didn't need any special care.
1 person likes this
@irishidid (8687)
• United States
2 Apr 16
Autism Speaks is the most horrible thing and I agree. I don't light up blue either. My daughter is 28 years old and we still deal with issues.
1 person likes this
@Ruby3881 (1963)
• Canada
2 Apr 16
The video actually looks more at the sensory issues a lot of autistic people have, than at the things that are key to a diagnosis of autism. But the other stuff is often more complex, and tougher to explain or portray. Also, with autism being a whole spectrum of different disorders, everyone's symptoms and struggles are different.
But I think the tantrums and sensory defensiveness are quite common, and they cause a lot of parents to avoid taking their child into a public place like a grocery store or a movie theatre. It's absolutely exhausting for both the parents and the child, and a lot of people don't understand so they tend to judge. We lived through a lot of nasty looks, tsking, and outright criticism of our parenting. We've even been stopped on the street by the police....
1 person likes this
@Ruby3881 (1963)
• Canada
3 Apr 16
@jaboUK Yup! That's actually common for people who have autistic kids. The police see an older child kicking up a ruckus on the street and assume there's something very wrong (kidnapping, child abuse, etc.) Many are really respectful when they're told the child has autism, but there are still a lot that will recommend useless and even dangerous courses of action. They just want to get the interaction over with, and they have no idea what they're talking about. They are not at all trained to deal with special needs people and their families.
1 person likes this
@Ruby3881 (1963)
• Canada
7 Apr 16
@CoralLevang Problem is, some ribbons have two or three different meanings that are all competing for awareness. Sometimes a ribbon just doesn't do it, and the icon ought to be something else. I looked up the zebra ribbon. There are three different causes, all using the same symbol. One of them is rare diseases, which means a whole ton of different conditions. See where it could confuse people?
1 person likes this
@KuznVinny (768)
• United States
2 Apr 16
At first there was some question as to whether my grandson, Noah, is autistic. Since then, they have encouraged us to work closely with him in certain ways. But, frankly, it is too early to tell. One thing is certain: he is smart. As to whether he will communicate via words: he is still less than two. Time will tell. I don't participate in "worldly" pursuits. Among these would be that blue-light business.
1 person likes this
@Ruby3881 (1963)
• Canada
2 Apr 16
A child can actually be diagnosed as early as 18 months. A diagnosis by a qualified professional at age 2 is very reliable. All children should be screen for developmental delays at well baby visits, and for autism in particular at 18 months and 24 months. Many parents aren't aware of the need for screenings, and many doctors are not yet doing the CHAT, which is the autism screening. It's non-invasive, takes just a few minutes, and can be done right in the office when baby goes for his check-up.
It sounds like Noah has good people looking out for him, and if they are recommending things for you to do while awaiting a diagnosis, it's a sign that they take a proactive approach. That's just awesome! Best of luck to you all 
1 person likes this
@12345fun (37)
• West Fargo, North Dakota
13 Oct 16
Thank you for letting me about Autism Speaks. I have a daughter with autism and I am trying my hardest to get people to realize she is just like everybody else. Everybody we deal with is mean to her and do not understand her. I will not giving them my extra change for anything.
@moondebi (1199)
• Bangalore, India
3 Apr 16
I could understand your emotion and the reasons behind. Every step with an autistic child is challenging and it is more for the society rather than the child himself.
I thought the situation in the developed countries is better as people would be more aware and compassionate. But it seems, problem has the same face everywhere.
Here, the situation is rather taxing as the parents don't find any suitable place for their child's education, socialization, medical needs and the whole lot of other things. There is even a bigger and the most terrifying concern.. 'what will happen to my child when I am not there'.
I am ever wondering how to find out the missing parts of that unsolved puzzle.
By the way, I am the mother of a 14 year old autistic child.
