“Light It Up Blue” is all over the place since it’s April – Autism Awareness Month. Yay! That’s the month I always dread, because my Facebook feed is flooded with posts by my Autistic friends on how much they loathe Autism Speaks and the whole “Light It Up Blue” campaign thing, and then! All the posts from parent friends who are posting stuff about how we oughta “Light It Up Blue”.
What is “Light It Up Blue” Anyway?
This part is more for my mom than anyone, because I know she’s going to ask me later. “Light It Up Blue” is this campaign that this organization called Autism Speaks puts out every year. It’s their signature campaign, supposedly to bring awareness and acceptance to Autistics and raise money for support and services to Autistics and their families.
It’s called “light it up blue” as supposedly more boys have autism than girls.
That sounds pretty great (acceptance! awareness! raising money for support and services!), but here’s the thing: Autism Speaks is BAD. It’s bad because, as the Autistic Self Advocacy Network (ASAN) says, “Autism Speaks has no significant autistic leadership and has never been aligned with the needs and priorities of the autistic community.”
Autism Speaks is an enormous organization that makes millions. It’s a non-profit, but don’t be misled by the term, “non-profit”! That only means that the profit that the organization makes goes back into the organization, which can mean (as it does in the case of Autism Speaks) that in “2013, Autism Speaks CEO’s salary was $371,000.”
That organization is Raking.It.In, to the tune of millions of dollars, on the backs of Autistics. How much of all the money that is donated actually goes to families and support services? It in the realm of a whopping 4%.
It occurred to me that this is all very similar to what the Alexander Graham Bell organization is doing with my own deaf community (remember my post on Nyle DiMarco?!), thrusting a medical model of disability on us, one that is based on a premise that we are broken, in need fixing, and seeks to cure us. This doesn’t align with what we know to be true: that we are as we should be. In line with the social model of disability, we are busy creating our own culture and removing barriers to our access.
Autism is no more a puzzle than anything else is. I mean, we don’t know what causes the Down syndrome that my daughter has, nor what really caused my own deafness. Or love for Star Trek. What about licorice? Who has the propensity for that? Who knows? Might be environmental, might be genetic; it’s a puzzle.
I wonder:
Does not understanding something, or not having all the answers (that would be nice to have sometimes) mean that you need to eradicate that which you don’t understand?
Does not knowing how exactly Autism will unfold and shape the way a person experiences life mean you need to not support the life that is lived with Autism?
Furthermore, is it fair or right to support an organization like Autism Speaks and continue to “light it up blue” because they crave fatter cushions upon which to sit, and ever-more research, media and advertising to perpetuate their medical model of disability?
Autism Speaks is not about understanding and accepting Autistics. The 3.8% that they actually spend on service grants for families and autistics shows that more clearly than words could.
Please don’t believe or buy into their hype; do your homework and tune in to the adult Autistics in the links below for more information.
Michelle Sutton (whose writing I love) wrote this: Blue Lights Won’t Help Me
And More Super Awesome Posts to Check Out That are BY Autistic People:
Autism Speaks and Representation, by Autistic Hoya
#Boycottautismspeaks: Communicating a Counternarrative Through Cyberactivism and Connective Action, by Sarah Parsloe
A big, beautiful collection of essays that are Anti-Autism Speaks: click here
ASAN Condemns White House Autism Proclamation
Autistic People, Parents and Advocates Speak About Autism Speaks, by The Art of Autism
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
Autistics run the REAL Autism Speaks – Autistics Speaking For Ourselves – an older facebook group, based in Ireland, Europe- https://www.facebook.com/groups/Autism.Speaks.Autistics.Speaking.for.Ourselves/ , https://www.facebook.com/AutisticUnion/ and https://www.facebook.com/groups/Goldforautism/ We call it Worldwide Autistic Acceptance Day (April 2nd) and World Autistic Acceptance Month- we are NOT Blue causing depression,nor broken puzzle pieces,nor to be cured,eradicated,eliminated and bleached. Our Rights as Aspies, Auties and Cousins to Neurodivergent life and our own representative bodies of, for, and by – controlled by a majority of autistics is Guaranteed under the United Nations Convention on the Human Rights of Disabled person – We alone as service users,and self and peer advocates have the right to be consulted and participate in decisions on our own kind at ALL Levels of Government, State and Public funded bodies. Groups that do not have a clear majority of us in charge do NOT represent us, and should cease fraudulently claiming to be autism or autistic bodies.
Amen! Nothing About Us Without Us.
Thanks for the links to the groups, and for your comment.
Is it common and acceptable to refer to people with Autism as “Autistics”? I’m sure that some people with Autism and advocates use the term, but I’m wondering if it is a universal thing. While I don’t have a strong personal connection to Autism advocacy, I’ve never heard the word “Autistic” used as a noun (as in, “a program designed for Autistics”), only as an adjective (i.e. “a program designed for Autistic people”). Saying “Autistics” seems to reduce a person’s entire existence to this one characteristic… To draw an analogy, I feel like it would be odd to refer to people with Down Syndrome as “Down Syndromes”, don’t you? Like, “She was just enrolled in a program for Down Syndromes” would come across as very odd to me. I feel the same way about saying “blacks”, “gays”, etc. It just seems to obscure the fact that we’re ultimately talking about *people* who just happen to one of their thousands of individual characteristics in common.
Yes! It’s so confusing isn’t it?!! I wrote this post here: https://www.meriahnichols.com/politically-correct-thing-to-say-with-disability/ addressing those very differences. I’m deaf but my daughter isn’t “Down syndrome”; Autistics are “Autistics” but people with Cerebral Palsy are people with Cerebral Palsy. I think it boils down to the preference of the group that’s being referred.
Whilst I agree with the sentiment I absolute detest the use of ‘autistics’ as a collective noun. My daughter is not ‘an autistic’, she is a beautiful, bright, clever, loving girl who happens to have Autism. She is Lily and I will never allow her autism to define her. People are people first, not their diagnosis, no matter what it is!
You can only say that from a perspective and belief that disability is a bad thing.
If you pivoted – as many of us with disabilities have – and saw that it’s a particular way of experiencing the world, you will be able to understand how many of us in the cross disability community DO identify with disability-first.
This post has more about this: https://www.meriahnichols.com/let-down-syndrome-define-you/
I am 72, and autistic. I don’t “happen to have” autism. I was born autistic and will die autistic. I am defined by my autism because I live it everyday. Most people aren’t aware of it, but I certainly am. Autistics is a perfectly fine collective noun. I would call a single Down Syndrome as a “Downs person”, or “downsy” which probably will annoy some people. But yes, our disabilities are essential to our being and should not be treated as an attachment. We can be all those other positive qualities as well, its not either/or. People are often very negative about the “A” word. Get over it, please. We are the creative genii who made the world through scientific technology, medical discoveries, wonderful art and music, story tellers and mathematicians, to name a few.
Please be proud of your autistic daughter!
I agree with you 100%, my daughter is a person who happens to have autism.
Of course she is a person! But you don’t just “happen to” have autism like you just “happen to have” brown hair. For one, brown hair won’t get you an IEP and you don’t need to plug in the ADA to protect your brown-haired rights.
Autism Speaks is terrible, but the puzzle piece is not a symbol for just Autism Speaks. It is a symbol of autism in general and was created by The National Autistic Society in London back in the 60s. My family will continue to spread blue and puzzle pieces during April for my cousin with autism and donate to meaningful organizations.
Support is everything; thanks for thinking through it all and contributing to meaningful organizations
I do not support autism speaks at all! However, I have an autism awareness puzzle piece tattoo in honor of all the people I have met, worked with, and cared for with asd. The reason I chose the puzzle piece ribbon was not because I think autism is a puzzle that needs to be solved, but that autism is a disorder that has so much diversity in it where no one is identical, but everyone fits together. I just wanted to share that because awareness is so important to me, and I don’t want anyone to be offended by my tattoo. P.s. I have volunteered with, mentored, worked, and caregiven for several individuals on the spectrum. I typically don’t forget anyone I’ve worked with. Although I don’t support autism speaks, I do support awareness because to this day when I tell someone I work with children with autism, many people still tell me, “I’ve heard of that, but what exactly is it?” So to me, personally, the puzzle piece ribbon (not just a puzzle piece) and not the saying “solving the puzzle” but world autism awareness day as an actual awareness day. I donate to my local autism society chapter as I have seen families actually benefitting from it, but I admittedly do not know what kind of autism leadership they include. Okay, I think that’s it :] take care thanks for sharing your article!
Thanks, Angela. I’ve gotten the feeling from your comment and others like yours that the puzzle piece and AS are really separate. You can love the puzzle piece, for awesome reasons like you talked about, but still not be into AS.
I completely agree! I think this post is fantastic and informative. I’m going to check out the group that the top commenter is talking about. Take care!
What does you being deaf have anything to do with your daughter not being Down Syndrome? That makes no sense. One of the things I’ve learned working in “Exceptional/Special Ed” is that we don’t call people by their disability. Calling people with autism “autistics” just rubbed me the wrong way.
There is a disability identity; in which someone prefers to be identified with their disability. All of the Autistics that I know prefer to be called “Autistic”, not “person with Autism”. I know it’s similar in the d/Deaf and blind communities (not “person with deafness” or “person with blindness”, you are “deaf” or “blind”) and that is NOT a bad or negative thing!
I don’t understand the first part of your question – can you rephrase or explain, please? thanks
The one thing that I find hard to agree with in this article is “don’t support because it is a group not run by people with autism”. Isn’t that like saying that most cancer research foundations are crap because they are not run by people with cancer? I also feel like if they are raising millions of dollars- then that 4% is a lot more than you would have without the support.
Research is important as well- just think of how the workd once was BEFORE the research. No one knee how to care for or educate children with autism, they were locked up in institutions and forgotten, because of research, we are where we are today. I honestly believe that MOST foundations for almost EVERY cause and disease- they majority of the funding goes towards research. Because it is meant to be about a better tomorrow.
I’m not really disputing that these organizations are “bad” because I don’t know enough about them to have that kind of opinion- I just do not necessarily agree with the reasons you pointed out as why they are bad. Something to ponder. God Bless!
A better analogy to a group led by one who is not a member of it in this case would be an organization that is supposedly for advancement of African Americans – like the NAACP – led by whites. Or an organization that is to serve the deaf that’s run by hearing people.
I don’t think I’ve said anywhere in the post that research is a bad thing, per so – it’s not. I think it’s necessary. But what I strongly disagree with is when an organization spends 4% of its money on services, when that’s supposedly what the organization is primarily about, AND it’s what most of the people who are fundraising are raising money for.
It is a fundamental principal of International law that were the rights of person with disability are concerned ONLY organisations and groups of persons with the disability as service users and/or peer and self advocates are to be consulted and involved in decision-making at ALL Levels of Government, state and public-funded bodies.
Only us can chose and direct what our needs are, NOT bodies whose main aim is to eradicate, eliminate, cure us or rid the planet of us and our rights. Bodies whom make claims to advocate and represent us are SCAM ARTISTS and Fraudulently misrepresenting us, and we stand up and point this out.
If such bodies do not have a majority of us in the spectrum in charge they are simple parents and professionals operating as IF a charity for promoting their issues against us.
Under the United Nations Convention on the Human Rights of Persons with Disability, the United Nations Standard Rules for PwD before and since the 60’s the Principal of Independent living is clear NOTHING ABOUT US WITHOUT US, and dare I add BY a majority of US!!!
Autistics know and understand OUR rights and expect Mundanes to accept our choices and our needs and not tell us what they do not want to allow us as they have different objects incompatible with our very principals and identity.
If a proportion of the research was in order to help us, rather then destroy us don’t think anyone would have a problem. The tone, and anti-autistic feel, and they way they deliberately exclude and demonise us, is however a big problem. If they had a majority of us allowed in there to disability proof their attitudes, instead of scaring people, then we would not be there. There are many groups run by ourselves in the majority, they way it is supposed to be and do not have the aires and graces of scamartists attacking us! :- https://www.youtube.com/watch?v=9UgLnWJFGHQ
We have an earlier European body, and because of the Stigma of A$ have had to change our name subtly afterwards :- https://www.facebook.com/groups/Autism.Speaks.Autistics.Speaking.for.Ourselves/
Sarah Lawrence College has dropped it’s participation in “Light It Up Blue”
http://www.sarahlawrencephoenix.com/campus/2017/4/12/light-it-up-blue-wont-be-lighting-it-up-at-slc
I confess, I am culpable if following and sending content to autism speaks.
Though I’m autistic and shouldn’t support them I do it for cold hard opportunism, to get my name and my work around.
I guess I’m part of the 4% that goes to helping support families. Autism Speaks was a huge help to me and my wife as well as our son when he was diagnosed as a 3 year old. He is an incredible 13 year old now and I credit Autism Speaks with at least helping us help him be him. I support them and will continue to, albeit not blindly, in the future
Well, I”m really glad it helped you and your family. Sincerely, I am.
Let’s not forget that autism is a spectrum disorder. It’s fantastic that people of all ages on the “higher” end of that spectrum can speak for themselves, advocate for themselves and others, participate and lead organizations and identify their life experience as a unique point of view. For the rest of them that cannot communicate, cannot care for themselves, cannot reciprocate the love & affection of the people that love & care for them–it’s foolish to think they would not want for anything other than improved treatments (medical or otherwise), preventions or, god-forbid, a cure for their condition. And then there’s the families. No amount of acceptance and understanding can deny the fact that having a child diagnosed with autism and supporting them thru all of their unique challenges carries with it far more stress (emotional, physical, financial) than their neuro-typical-child parent peers. So, yes, research and treatments that could prevent that, or at least mitigate it…how could you say no.
Thank you so much!!!!!!
theamazinJ
Also Autism Speaks has changed a lot over the past two years, since this was written. I would take a look into the current organization to get the updated information.
Thank you. You explained that very well.
Isn’t downs syndroms caused by trisomy 21? pretty sure we know the cause…
Right – and what makes the extra chromosome triplicate? THAT is the essential part of what causes Down syndrome and THAT is unknown.
I’m with Mike and Haley. My daughter is autistic. I love and appreciate who she is and so very proud! Research is a very instrumental part of understanding, improving services, and creating awareness. Knowledge is power. The more we know the more we grow. It’s not about “eradicating” and I think articles like this can spread the wrong message and keep people from donating to something that’s needed for progress. Thanks for that. This article undermines the emotional aspect of what autistic parents go through. The puzzle piece, to me, is worn with pride and represents the mystery and uniqueness behind autism. Every autistic person is effected differently, it’s a spectrum. Yes, mystery, because not only is it unknown what causes autism but my daughter changes from hour to hour, day to day. Trying to understand why she changes, why she does certain things, etc. Right now at least, so much about her is mysterious. But the more I learn, I feel like it’s another piece of the puzzle to understand her. I do think “light it up blue” is outdated. It is a statistical error and diagnostic error. They should change that. As for adults with autism, not all autistic people are “high functioning” (whatever that is, not a fan of the terms) and it’s not fair to speak for all autistic people and try to portray it as something that’s not disabling because it is for so many others! Speak for yourself only, maybe that’s one of the ways awareness can improve. Give well rounded information, please, autistic adults.
I agree with you Holly, 100%. I can’t, for the life of me, figure out the dissension within the autism community regarding autism speaks. It is a multi-million dollar organization, that is non-profit (their operational costs are a fraction of other major non-profits like the Red Cross, the Salvation Army, and the Cancer Society), similarly, their CEO’s salary is entirely appropriate given the size and scale of the organization. What other ASD organization promotes awareness 1/2 as much? Autism Speaks mandate is not “to provide family services”, it is to raise awareness and to research causes and treatments. This whole idea that Autism Speaks wants to “eradicate autistics” is ridiculous! It doesn’t even make business sense (they’d put themselves out of business wouldn’t they?), let alone be possible- since we all know there is NO CURE for autism.
Prevention? Totally different story. If a researcher could determine that by improving prenatal health through vitamin supplementation at precisely 2 weeks gestation prevents 90% of ASD diagnosis…wouldn’t every parent choose that for their child? And in turn, wouldn’t every autistic born after that discovery have the right, and the responsibility to ask their parent if they were aware? Pregnancy testing methods would change, millions of children would be impacted every year. I’m sure i’ll Catch heat for saying so, but I would spare my child their autism if I could. They would still have a myriad of other issues, but anything to make their life better, I would do.
And so I will continue to light it up blue, wear the puzzle piece, and share both with anyone who will listen. Every organization that supports ASD, and in some shape or form, my child, gets my support in turn.
I wouldn’t expect only make-up artists to run MAC cosmetics, nor only Engineers to run an Oil and Gas company. Just like any puzzle, many pieces are needed to complete the whole.
To use your analogy, what’s going on with Autism Speaks is like MAC cosmetics being run WITHOUT makeup artists, and an oil and gas company being run WITHOUT engineers.
THat’s where they are getting it wrong.
As a parent of a child on the spectrum I can say without a doubt that Autism Speaks has helped me immensely. Complaining that there are very few on the spectrum making decisions on the board is like saying you wont go a funeral home unless it’s run by dead people or only going to see your doctor when he or she is sick. You don’t have to have autism to understand it’s challenges. I certainly consider myself an expert on my 4 year old’s behavior, I’m a single father who lives with him 24/7, so I don’t think I need some else on the spectrum to decipher or decode what I see in his patterned behaviors. Of course a lot of the money raised goes back into the foundation, that’s how they continue to grow, attract qualified staff and secure a foothold in society. To me it sounds like just one more case of someone complaining just to complain. I understand that this is your blog and your content but why use it as a platform to spread hate? Any help is better than no help. Promoting other organizations is fine just make sure that you clearly state that you have a bias so that people reading this can take your opinion into account and then make up their own minds.
No; it’s NOT like only going to a funeral home unless it’s run by dead people. It’s like being part of an organization that is about African Americans that is only run by European Americans. The challenges, culture, and intricacies of disability culture – of Autistic culture – can only truly be understood by someone wearing the shoes. You, as dedicated a father as you might be, are only holding the hand of someone wearing the shoes. You will never truly understand what it’s like to be Autistic.
And this is getting to my point: there is a fundamental lack of respect for that experience. There are plenty of Autistic adults that are ready and willing to lead – check out http://www.asan.org – and it’s a crying shame that you, along with Autism Speaks, are ignoring them.
I will not do the same with my own Autistic child.
I have the type of autism that most people don’t notice. I had good grades in school, spoke in full sentences before the age of two, and now autism mostly causes some minor social awkwardness and sensory issues. Even if I’m so well functioning in all areas, I would still cure my autism if I could. We can’t neglect the medical model of autism, just like we can’t neglect the social model!