I must interrupt my previously planned programming regarding the recording of Barb’s audio book, I might be you and mention the “light it up blue” campaign from Autism Speaks, as April is fast upon us. I know a great many, really well-meaning people will be “lighting it up blue” on at least one day in April, but I urge you to reconsider. For those of you who love reading links to other relevant posts on the topic, here you go…
Warning April is Coming! ~ Gareeth’s Blog
Autism Acceptance Day ~ This blog was started by Paula Durbin-Westby and originally began as a way to counter the “awareness” that Autism Speaks suggests it is promoting.
Tone it Down Taupe This April!! ~ From Radical Neurodivergence Speaking an alternative to the “light it up blue” campaign! This is a MUST read and it’s also very funny.
For those of you who can’t cope with yet another link, let me try to explain. “Lighting it up blue” seems like a perfectly benign and thoughtful thing to do, yet what is meant as a token gesture of caring and thoughtfulness, is actually anything but that. Lighting it up blue is an ad campaign by Autism Speaks. It is less about bringing any real awareness about autism or the lives being led by those who are Autistic and everything about branding and promoting that brand that is Autism Speaks. It is a brilliant campaign. Most people who “light it up blue” believe they are showing solidarity and support to Autistic people. Most people would be shocked to know that Autism Speaks is the single most powerful organization promoting fear of autism by using language to describe autism as a “terrifying epidemic,” “a crisis” and Autistic people as “burdens” to society.
This quote is taken from Autism Speaks website:
“Acceptance
Ultimately, you may feel a sense of acceptance. It’s helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism.”
This sentence encapsulates everything I once believed and thought about autism and my autistic child. This idea is incredibly destructive and insidious in it’s seemingly benign wording, but it is anything but that. If we separate out the person from their neurology, what do we have? How do we do that? What exactly does this mean? This sentence from Autism Speaks is exactly what is wrong with the organization. You cannot accept your child while NOT accepting their neurology. It is not possible. Yet this is exactly what I believed for many years to the detriment of my child’s well-being, to the detriment of her self-esteem, to the detriment of who and what she is. But I didn’t know that.
“Lighting it up blue” is not helping any of our children or those who are Autistic. The only one who is benefiting from this campaign is the organization who came up with it – Autism Speaks.
So before you head to the hardware store to find some blue light bulbs or open your check book, please, reconsider. Think how you would feel if this campaign was about your neurology. Because as Barb Rentenbach has so beautifully written in her book that I am currently recording the audio version for,
I might be you.
Emma's Hope Book 
Awesome as always. And I thank you greatly for the “Tone It Down Taupe” reference from Radical Neurodivergence Speaking. I read it yesterday and was laughing out loud. I found it both brilliant and funny. But then my wires get crossed and I wasn’t sure if it was suppose to be funny b/c I had never read Rad Neuro… i ill now, though!
Thanks so much Renee. I always enjoy a good parody!
Autism Acceptance month isn’t even upon us yet, and I am already experiencing autism fatigue. I am so frustrated by the divisiveness in our community. I used to be very anti-Autism Speaks, but I’ve since had a change of heart. My son is non-verbal, and in many ways very severe. I have come around to Autism Speaks, because I feel they have done a very successful job of promoting the plight of parents like me, who do not have a child who is able to successfully advocate for himself. I’m not interested in arguing about semantics, here. I think that if the community is going to receive a high profile, and encourage donations and funding, the story of children like mine needs to be told. My son needs help. He needs services. I accept my child, but I don’t “accept” that my child is neccessarily just fine the way he is, not after watching him meltdown due to frustration over his inability to communicate his basic needs. He needs Speech and Language Therapy and Occupational Therapy, therapies we can’t afford. We need the kind of help AS is lobbying for. Temple Grandin’s mother lobbied for her before she was able to lobby for herself. Temple has even expressed gratitude to her mother for only allowing her an hour a day to be “autistic”! She is thankful that her mother taught her how to adhere to the conventional rules of society. Temple tells us, as parents, it’s okay to groom our children for the world, but it seems the rest of the self-advocate community is simply saying “Accept, accept, accept”. Well, which is it? As a parent, I have come to realize that I will never win. I don’t want my son to “pass” (as NT), I just want him to have a fair shot. I want him to be able to speak, ultimately, for himself and until then, I will take all the help I can get–even if it comes from Autism Speaks. Let the barrage of negative feedback begin…
Merry – I really understand the fatigue you describe. As (I think it was to you) I wrote to on FB, if we all sat down together I doubt anyone would suggest you should not seek the help your son so desperately needs. I do not know of anyone who would dispute the massive need for more services.
Thanks for reaching out and leaving this comment as I think the more we are all able to share our views and engage in dialogue, even if we disagree, the more we will all have the energy to support and help.
Think of the most true and important and intrinsic thing about you. Whatever that is to you.
Now think what it would feel like if there were a massively powerful and affluent organization that treated that thing about you the way that Autism Speaks treats autism. That told the whole world, and got most people to believe them, that you would never be a true and whole person as long as that thing was true.
It is okay to prepare your children to navigate the world; that’s just called parenting. But not to tell them that they’re fundamentally unacceptable the way they are. That hurts like hell. And also won’t make them better off in the world anyway.
chavisory, this may be the most perfectly articulated comment on this subject i have ever read. WELL SAID.
You express yourself well. I am in your court as a result of your remarks.
I have come to wonder if the inability to speak isn’t partly a result of the developmental delay seen in most – all? – autistic children. Perhaps I think this way because of my experience with my son. He began speaking after a summer spent with his cousins, one of whom was the same age as he. I think he was fortunate to have her as a model. He still doesn’t speak much, but he certainly can engage in a conversation with anyone if he sees a reason to! I blame developmental delay in my son’s case because he was diagnosed developmentally delayed when he was two years old. This was forty years ago. When he was eight or nine years old I asked him why, when he was little, he never called me “Mommy.” He replied, ” Well until I was about five, I thought you and I were the same person.” Made me think of the terrible twos when toddlers are beginning to realize that they are independent beings. As J. was 2-3 years developmentally delayed his words made sense to me.
I have found that it really pays to ask questions – not “How was school today?” but “Why do you think your teacher wants you to learn the words on your word ring?” Give him something to ponder. I was so often amazed at the depth of understanding he exhibited in his answer. I’m sure I don’t need to tell you what a boost his answers gave me. I believe autistic children like to answer questions that are intelligent questions.
Is your son using any kind of keyboarding communication? As he gets older he might even want to compose poems or stories on keyboard. I believe all children need to express themselves even if they aren’t speaking yet.
I wish you and your son all the best and great success with his learning to speak.
All the best to you both.
Ruth, WOW! What your son said: “Well until I was about five, I thought you and I were the same person.”
My mostly non-verbal son is 5 and that pretty much sums up *exactly* where we are right now. I think I utter the phrase to him “Despite what you think, I cannot read your mind. I am trying, but you will have to find a way to help me understand what you want.” at least once every day, sometimes it feels like 100 times!
I think you are spot on about the delay – I try to remind myself often about the fact that since my ASD sons (got 2) are neurologically divergent, it naturally follows that their developmental timeline will be divergent as well. I am totally fine with this (I am an unschooler, so I am all about the All-In-It’s-Own-Time philosophy), but I still need to stay on my toes about not falling prey to preconceived notions about when certain things will happen developmentally. Thanks so very much for reminding us all. 🙂
Very interesting, Ruth. Thank you for sharing your story–it gives me hope. My son uses Makaton (sign language) and PECS. He has a few single words (i.e. “go” “up” and “eat”), but he seems to struggle with the basic mechanics of speech and language. His understanding is excellent, though, so we are hopeful that speech will follow. Thank you for your feedback, and best to you and yours as well 🙂
Hello! I really appreciate you speaking out and standing up to the advertising campaign masquerading as an “awareness campaign” by Autism Speaks. I was just really thinking, what is the point of lighting stuff up blue? It just doesn’t make any sense to me. I would actually rather either keep my lights on or off than use blue lights, which bother me a lot — not with the color, but with the hypocrisy of the bigots that Autism Speaks is.
By the way, I know it’d be a shameless plug, but I’d like to promote a similar counter-event that I have proposed: http://autisticbigbro.wordpress.com/2013/03/26/b-wear/.
Thanks and best regards!
Hey thanks so much for the comment and the link! A friend of mine alerted me to your blog just yesterday. Will be adding you to my blog roll!!
And you can also let Autism $peaks know What We Want to Say. That’s today! Flash blog
http://autisticswanttosay.blogspot.com/2013/03/autism-speaks-i-want-to-say-flash-blog.html
Thanks for your response, Ariane. I have a lot of respect for you. I think I’m just tired of all the autism rhetoric. I’m not interested in having to choose sides–the only side I’m on is my child’s. I just wish we could band together as a community and create strategies to make our children’s lives easier, rather than all of this pointless bickering, all of this tit for tat. It’s useless, and it’s a waste of time and resources. Anyway, thank you, Ariane, for letting me share (vent!).
…but there are going to be sides so long as there are Daleks (that is, A$ and their ilk) saying “exterminate, exterminate”. It’s not unreasonable for people to not want to be, you know, fundamentally changed.
Re: your son’s difficulties…we (Autistic activists) want him to get appropriate supports, too! That’s part of *why* I am anti cure! It diverts attention and concern away from people who, right now, are autistic & need help to be the best, happiest, most fulfilled THEM they can be.
(and yes, I do know autistics who would be considered ‘severe’. I teach advocacy to kids with all sorts of functional language abilities, including “none at all”. It’s amazing how much more direct communication one gets when using symbols to mean things is actually useful & worth the effort).
I think if we can get rid of the word “speak” and instead use the word “communicate” this whole autism speaking issue will get better oriented. For one, we’d at least entertain the notion that communication is more than words and we’ll learn to listen better.
I think it may be useful and less divisive if we can identify specific disabilities relating to autism (and any DSM coded “conditions” for that matter) without extrapolating to the person himself or herself.
That is to say, there are very real spectra of disabilities relating to autism and these disabilities when severe -must- be addressed without judging what it means to want to address the disabilities. Only we tend to make judgment about what it “means” and the parents’ motivation, instead of looking at the disabilities that the parents want to address.
On the other hand, I do think that it is important how we choose a corporate/representative “entity”, and often the default is whatever has the most power, even if we don’t necessarily agree with that entity’s position, we feel like we have no better choice presented.
Maybe a solution is for organizations like ASAN to become more visible and proactive partners with parents of autistic individuals who have “severe” disabilities as part of being autistic – parents who feel like they’re being blamed or overlooked because they cannot or will not choose “acceptance” the way parents in the community seem to define. I “accept” my child but I also see that my child has very real disabilities that must be recognized and addressed, and this doesn’t mean I want to “cure” my child, and I’d still like to manage those disabilities and not let these become personal/emotional liabilities for my child’s future. I am basing my observation on my personal experience being on the depression “spectra” where I won’t think of blaming someone who severely debilitating depression as wrong to want to view depression as a disease needing a “cure” because I can only imagine what it may be like to live with that severity of disability due to a neurological “disorder” per DSM.
When I start looking at specific disabilities in this way, it makes me more understanding of why there are parents who may not agree with AS but feel like they have no better choice. If they have a better choice, then those organizations need to do better at reaching out to them and making them feel included.
Very well said. You have summed up my personal views exactly.
Before reading this i would have happily lit it up blue thinking I was helping people who have Autism but now I understand that lighting it up blue is just another way of separating those who have Autism from those who don’t.
To Merry,
Autism Speaks isn’t going to get you help for your son. And I understand that he needs services. The rhetoric of Autism Speaks doesn’t help anyone. you can find some help and resources through your state’s Department of Human Services, the Autism Society of America (your State probably has a chapter) and the best developmental pediatrician in your area. (They always know what’s going on – who’s doing what therapy etc.)
Thank you, Gayle.
I’ve also seen the Doug Flutie Jr. Foundation recommended as an organization that actually gets resources to kids and families who need them.
My entire household will be sporting ‘Tone it Down Taupe’ ribbons all April. Props to Lia for making them for me! Ariane, I’ve been where you are and supported Autism Speak before, until I started listening to autistic people, including my own son, once he started to speak. I realized there was nothing in any of these individuals that needs to be cured, or even needed to be prevented. They need to be heard and they need to be accepted. I intend to do all I can, as an autism mom, to undermine Autism Speaks at every turn. Of course, I don’t have the funds that they do, but many voices combined together can be a lot louder then cash. The trick is getting everyone within the autism community to start acting like one community rather then two, or three. We need solidarity and that comes with acceptance. Acceptance of autism and that it is part of who our loved ones with it are.
I love those “Tone it Down Taupe” ribbons! And the googly eyes… priceless.
I agree, acceptance is key.
I look forward to the day when as a community we might come together utilizing the strengths and skills of individual organizations for the benefit of autistics. IMAGINE FORWARD
Me too, Judy! Me, too.
Hell no..will not be doing any of that stuff. I am writing a piece about autism acceptance and what my child has taught me, and that is all. Thanks for sharing this.
Will you send me the link here when you’ve finished writing that piece? I’d love to read it!
Sure…it is going on someone else’s page so I am not sure of the timing. Still slogging through it. Writing is a slow and painful process for me 😉
Here is the guest piece I wrote: http://jenniferajanes.com/autism-is-my-greatest-teacher/
Thanks so much for including the link. Just went over and read. It’s beautiful and I couldn’t agree more. Thank you so much!!
Unless I’m mistaken the words and phrases “terrifying epidemic”, “a crisis” and viewing Autistic people as “burdens” to society was from the earlier days of Autism Speaks? Are they still saying that?
Those quotes were taken from the congressional hearings this past December from Bob Wright, founder of Autism Speaks. But you are correct, the actual web site of Autism Speaks has done a great deal to soften their language and it’s a good first step, but the meaning remains. I hope that as time goes on they will also begin to understand the tremendous psychological damage being done to all who are Autistic by the way they speak and discuss autism and Autistic people.
Autism Speaks, by the nature of their rhetoric, do not seek a community with autistic people. That is sadly true. And while they present themselves as representing parents, they provide little to no real service to families. Parenting comes with difficulties, some more than others. But any organization that continues to present my child as a “terrifying epidemic” is not my community.
Merry, I do understand your desire for a community, I wish for it too, but would you belong to a community that would not accept your child? I can’t. But maybe we, parents who accept our children, can form that community. It has been great for me to find autistic adults and parents out there and to listen to them. In the name of building a community, I can not accept Autism Speaks and will not light it up blue. I will however, enjoy those taupe ribbons!
My best wishes to all of you.
Jane
I meant to say “parents who accept their children” and autistic adults can form a community. We need autistic adults in our lives because I prefer a positive future for my child.
Jane
I need Autistic adults in my life because selfishly, my life is so much richer and happier as a direct result, but also because I want my daughter to know and be around those who share her neurology as well as know there is a community of people who are bush whacking a trail ahead of her so that her life may be just a little easier. I see so many Autistic adults courageously leading the way, not just for themselves, but so that OUR children may have a better life. This is something many do not seem to completely recognize or appreciate. I OWE them to bring awareness and acceptance to the table. I don’t see this as a choice. I see this as a debt of gratitude that I will never be able to fully repay, but that I will do my best to honor.
Why blue? Does anyone know? Why even was that colour even selected? Was it the only one left? I worry it gives the impression that something is being done to support people with autism. That is what I would think if I wasn’t a parent of children with autism here in Australia. The reality here is that in our local area we just lost Federal funding for a program that assists adults with employment. All our state’s Autism orginisation Amaze aka Autism Victoria does is do a nice walk, release some doves and charge $8 a child for a bouncing castle some face painting and a petting zoo! Oh great- what the h#ll does that achieve? Completely silent on the loss of services- god forbid they lose THEIR funding by criticizing the government. Well at least Roslyn did her bit today- found some paints and coloured herself green.
The whole question of blue is one I’ve thought about a lot, especially because recently my daughter has been fascinated with colors and mixing colors.
I always loved the color, personally, but if I put on my advertising cap, I would be thinking about the psychology of color and were I advising a client, blue is psychologically a “cool” color, it is often associated with sadness, hence Picasso’s “blue period” and the various uses of the word blue as in “I’m feeling blue”. Some say blue is associated with aloofness too.
Autism Speaks is a huge and extremely wealthy non-profit, they have a PR firm and were certainly advised. I do not think it’s any accident that they chose the color blue as the color to be associated with their concept of Autism.
PS Love that Roslyn painted herself green. If I had to choose one color I would have chosen green too!
Mean mummy- I made her go shower it off. But I did paint her nails green for her afterwards.
Wonderful mummy!! Green nails are fabulous!!
I just wanted to say that reading this thread of comments has made me almost cry (in a good way!). Recently I have seen so many hurtful, even hateful words hurled between people who disagree. Everyone here has been so respectful, so willing to listen to one another. THIS is the kind of community and interactions I hope will exist for my son, the bigger he gets. Thanks.
Yes, Alicia! The level of respect that is evident in the comment threads of Emma’s Hope Book has always kind of floored me. I think we *all* have experienced the nastiness that can develop pretty quickly when divergent opinions come face to face in various forums.
It is perhaps my favorite thing about Ariane’s blog; this community of parents, Autistic adults, and Autistic parents, having open and respectful dialogues in the comments following posts. (Like Ariane, I cannot really adequately express how pleased and extremely grateful I am every time I see that another Autistic person has joined the conversation.)
And, of course, there is Ariane’s always eloquent and effective writing style… that certainly holds me hostage to this blog as much as anything… If not more! 😉
((((Katrina))))
Alicia, I cannot take credit for the lovely comments others leave and the level of civility and respect that is used by all, but it makes me very, very happy to see it as I have learned so much from all who come here and leave their thoughts and share their opinions.
Do not forget; your life is in your hands, be free, try
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I am currently authoring a letter to the local media regarding this issue and I would like to use some of the information in this blog to alert people to this issue. May I have permission to do so? Sincerely, Kimberley Dudek, BA. C.E.O. & Founder, Aspies Inc. http://www.aspies.ca
Yes, absolutely. Thank you for asking.
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