Why I don’t support Autism Speaks (which is why I don’t ‘light it up blue’)

 

I’ve found myself explaining to a number of people recently why I don’t support Autism Speaks, so I figured maybe it was just easier to write a blog post about it so all my reasons would be in one place that I could then just link to. Blogging inspired by laziness, if you will.

This is a tricky topic for me because I have friends who do support Autism Speaks (AS) and have found their local AS chapters in particular to be helpful and supportive. I’m not about to withdraw much-needed love and support from these friends but I continue to make it clear why I disagree with their choice in this regard. So much so that the fact we’re still friends is a testament to their inexhaustible patience when it comes to putting up with me.

There are also a lot of people out there who support AS because when they google for information about autism, it’s the first site that comes up. This is another reason why I feel the need to speak out and explain publicly why I can’t support this charity. In fact, I encourage everyone to do their due diligence when it comes to supporting any organization, whether that support is either moral or financial.

So, here’s the list of reasons why I don’t support AS:

They support eugenics

Yep, I used the ‘e’ word but I’m actually not doing it to be inflammatory. I’m not suggesting that AS is full of Nazis or anything else that is completely untrue so calm down already.

Eugenics doesn’t have to be seen as wholly negative in nature – one can argue that any research focused on trying to eliminate genetically inherited conditions (like Huntingtons or cystic fibrosis) is eugenics. That’s why there’s always so much ethical controversy over this type of research because:

  • it could lead to unforeseen outcomes.
  • Unless a birth defect is uniformly lethal prior to or at birth then who gets to decide whether that trait or condition is considered ‘undesirable’?

Whether its intentions are positive or not, I’m not a fan of a eugenic approach. Genetic therapies, genetic testing – I don’t in general have a problem with those, but trying to direct the course of human evolution – that leaves me queasy.

How can I say that AS is a eugenic organization? Well it’s right on their website:

“Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism.”

It’s also right there in Part II of their Form 990 (U.S. tax return filings).

They want to eliminate autism. I’m not going to support anyone who wishes my sons could have been prevented.

They are anti-autistic

Not one of their board members is autistic. Not one of their leadership team is autistic. One person, John Elder Robison, is a member of the Autism Speaks Scientific Advisory and Scientific Treatment Board – he self-identifies as aspergian rather than autistic.*

*Updated: In November 2013, John Elder Robison publicly resigned all his posts at Autism Speaks. You can read his resignation letter here. In his letter he stated:

Autism Speaks says it’s the advocacy group for people with autism and their families.  It’s not, despite having had many chances to become that voice.  Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.

If there was an organization called “Femininity Speaks”, led and staffed by men whose goal was to prevent, treat and cure femaleness, would you be comfortable with that?

Take a look at the responses from autistic people to the AS produced video on AAC: Autism Speaks, I want to Say for a wonderful set of critiques about why the messaging from AS is still anti-autistic and very problematic.

They don’t spend money in ways that would actually support autistic people and their families

Let’s take another look at that Form 990 from 2011 (the latest year available). Total revenue (Part I, line 8): $50, 238, 297. Amount spent on family services (Part III, line 4c): $4,477,702, or 8.9% (round down to 1 decimal place).

I think that bears repeating: less than 10% of AS’ gross revenue is spent on helping autistic people and their families.

They spend a lot of money on executive and independent contractors’ compensation

Form 990 Part Part IX line 5: Compensation for key employees – $3, 154, 665. This isn’t total compensation, this is just for the highly paid, top executives. There are 18 people in AS who make in excess of $130,000.

Total compensation for all of AS would also include lines 7, 8 and 9 which adds up to $14,620,085.

Line 11 includes all the amounts paid to independent contractors including government lobbyists, public relations firms as well as legal, accounting and management firms. The total amount paid out is $2,864,784.

Do I have a problem with charities paying their employees a reasonable, competitive wage? Absolutely not. Do I have a problem with an autism charity spending 5 times as much on compensation, public relations, lobbying, etc than on autistic people and their families? Yes, I do.

For every dollar you donate to AS, less than a dime goes to autistic people and their families but 41 cents will go towards compensating AS executives, employees and independent contractors.

Why not support ‘light it up blue’?

AS started the light it up blue campaign. It’s inextricably linked with them so by supporting it you provide them with free publicity, legitimacy and, if you buy a blue lightbulb at Home Depot (the co-founder of Home Depot is on the AS board), then you are financially supporting them as well.

For the perspective of some autistic people on this, check out the Tone it Down Taupe campaign.

Tone it Down Taupe ribbon

I love someone without autism

Are there any ‘good’ autism charities out there?

Here are the ones that seem to be the least problematic:

Autistic Self Advocacy Network

The Doug Flutie Jr. Foundation

If you’re in Toronto, my recommendation would be The Geneva Centre for Autism.

Let’s move from awareness to acceptance

No point in me re-writing this, so just go read a couple of excellent round ups from Steve Silberman and Shannon Rosa of why autistic people want you to focus on acceptance of autism, not awareness. I’m with them 100%.

Someone recently asked me how I would encapsulate the difference between awareness and acceptance. My best attempt was that awareness stigmatizes difference but acceptance values it. I value my boys, just the way they are.

My beautiful boys

My beautiful boys

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89 Responses to Why I don’t support Autism Speaks (which is why I don’t ‘light it up blue’)

  1. Lisa April 2, 2013 at 3:48 pm #

    Great post but one thing that got my goat – in my opinion being Aspergian is being Autistic. Both are on the spectrum. That always upsets me as it implies having Asperger’s is the high functioning easy face of autism and therefore needs less support or awareness. Tis a spectrum.

    • OMum22 April 2, 2013 at 3:50 pm #

      I agree with you completely Lisa. Actually, I think it’s one reason why it’s beneficial for the aspergers diagnosis to be rolled into the definition of autism because, as you say, it’s a spectrum.

    • Adrieanne April 2, 2016 at 9:06 am #

      This stood out to me immediately as well. I have an aspergers son who is 11 and though high functioning definatly has his difficulties and should not be considered less. I’m sure this man deals with his daily struggles as well. People with aspergers deserve just as much support

  2. Lisa Neely April 2, 2013 at 4:06 pm #

    Thank you for posting your stance on AS and their Light it up Blue campaign. I would also like to thank you for posting the financials, as I find it time consuming to get to the bottom lines… However, I find it very telling how 501 c(3) organizations think bases on bottom lines. I would expect from an organization such as AS to be spending much more than 8.9 % of their funds on supporting families.
    While I am typing this, I notice the light from my computer speaker is on, and it’s blue… time to shut it down, and tone it down taupe 😉

  3. LisaMaree Grace App April 2, 2013 at 4:22 pm #

    I don’t support Autism Speaks but I do support the United Nations General Assembly resolution “62/139 – and adopted on 18 December 2007 (according to Wikipedia) to “raise awareness of autism on all levels in Society”
    It was actually first celebrated in Qatar in 1989 and they brought it to the UN.

    Don’t let the fact that A.S. hijacked it in the US put you off what is actually a really cool day to promote Awareness: Life is much easier when people recognise autism and there is always someone who might decide to get a referral because they are noticing the symptoms.
    Acceptance: Being accepted by your family, your community and coming to terms with it yourself because you can see it is being celebrated
    And Making Allowances: getting people to understand that it is not about shaking a can or asking them to write cheques. That they can do a few small things that make living with autism easier. As Shannon Rosa said; one of the best things you can give a person with autism is your place at the head of a queue! Or if you are a restaurant hostess; save a booth for your regular customers who happen to have a teenager with autism (Like me!) or if you are a supermarket manager and you see a Mum with a child who is in sensory overload – open up a new till and help them get the groceries done so they can get home.

    I like lighting it up blue because it gives me a chance to start a conversation with the “normals” about how great my kids are and how they can be part of their lives.

    I am not giving it up to A.S. I am reclaiming it!

    xx

    • Sarah March 22, 2016 at 2:41 pm #

      I could tell have said this better myself. I give away blue light bulbs with flyers about autism it’s effects on the person and the family. I’m a big believer in Autism Acceptance but people are not going to Accept if they are not aware! I’ve never liked AS and the dialog.. But if I can teach one person with handing them a light bulb then I have done my 6 year old non-verbal son a favor and enlightened the person receiving the bulb 🙂

  4. Frank Jewett April 2, 2013 at 4:41 pm #

    You have every right to your expressions of feeling. The financial details are the downfall of many if not most ‘charities’ or non-profits. Too bad that their ‘executives’ cannot donate their time and energy and forego the expenses of travel, posh hotels, banquets, etc. It is unfortunate and epidemic–remember the United Fund fiasco a few years ago.

    The single-digit percentage of funds that actually reach the people that the charities supposedly help is also unfortunate–but typical if you read the fine print.

    Many of us lower level participants donate our time, money, and labor to help others. It doesn’t matter whether we work with local food pantries, find clothing and shelter for victims of calamities, read stories to children in community libraries, or participate in larger endeavor groups. It may be a good feeling to be a $300,000 executive of a non-profit. I wouldn’t know. What I DO know is that helping others is its own reward, and that’s enough.

  5. Kerri Boyle Samuelson April 2, 2013 at 6:24 pm #

    I agree and I fully support those with Autism or have a child or children with Autism. I believe you can support Autism in many ways. I also believe that Build A Bear doesn’t really support them much either as I purchased 10 Bears, some for a few sites & 5 for my friends to do a raffle so I could give them a chance to buy a raffle ticket so I can still try to get an iPad for a Baby that just passed a month ago today from a disease nobody even knows and that I also have. Opsoclonus Myoclonus Syndrome. 1 in 10 million get it every year and some actually die from it. I promised that baby an iPad & I will do what I can for that Family to honor that promise even in his Memory. So I will be conducting a Raffle for the 5 Bears I do have. 🙂 They were sold out of reservations so I felt it a win win for the parents I know to get a chance in the raffle based on the Build A Bear saying they were sold out based on Autism Speaks. Now they may have stock. lol! Who really knows. I was doing it to be kind & also not to have just another chipin but a chipin with an opportunity. I did notice on the Site that there were so many folks complaining that more than $1 should go to Autism Speaks when the bears are $18 & The T shirts are $7 which Autism Speaks produced I found out from the store & they received $.50 of each T-shirt. I know there are many walks , fundraisers, wtc. I will sponsor my friends because I love their children but I have very much worried about the MONEY & where it does go! I recommend looking on http://CharityNavigator,org and they will show you the best places to give your money and the rating system for charities like a BBB for Charities. Great Article Deanne. I do However support Build A Bear because they are smart enough to keep most of their money. Autism speaks is not Transparent enough & in a HUGE High Rise in NYC. There are many Non-Profits, Companies, People with Computers that are not what they are supposed to be. Always look at Charity Navigator. If I gave the wrong link just Google, they just updated everything within the last month. God Bless! I support everyone with any Special Need & Disability! I have them, my child does & many of my friends do as well as their children. If you are interested in entering the raffle to help fund the iPad In Memory of Baby Maddox Churchill who lost his fight to OMS, Epilepsy & Finally Cardiac Arrest please leave me a message. I still need to set it up. Good Luck & God Bless! I Support Autism! <3

  6. Cherish Allen April 2, 2013 at 7:49 pm #

    At first I was mad when I seen this, but after reading it I fully understand why you say that. And now have to denounce my support of the group as well. I do support other autism organizations.

  7. Diane April 3, 2013 at 1:21 am #

    Love your distinction between awareness and acceptance. I’m sure I will be quoting you on that one.

  8. Angie April 6, 2013 at 3:12 am #

    I am on the same page with Autism Speaks. So many people just blindly follow them without looking at what they do/ do mot do, who is/ is not on their board, etc that I find it mind boggling. Thanks.

  9. Cindy June 10, 2013 at 7:20 am #

    I so loved your post. I am 54 and autistic, so the only label I had to deal with, as a child, was “odd” – which was fine with me because it meant I wasn’t like “them”, for which I was extremely grateful. I can’t imagine growing up thinking I was defective. I have communicated with several younger autistics on forums and it seems some (or many) have been convinced that they are, indeed, “defective” and it just broke my heart in such a way that I simply couldn’t look at it anymore. I wish I could express the (squealing) joy I feel, having discovered that there are two boys with someone like you – and that there is some hope ‘out there”.

    • OMum22 June 24, 2013 at 11:09 pm #

      Thank you so much Cindy for your kind words. I am heartened by the (it seems to me), growing numbers of parents who are appreciating that their children are different rather than broken.

    • trudy April 4, 2015 at 6:31 pm #

      I agree with you totally! My 15 yr old daughter sees herself as defective because she’s autistic, I grew up being “weird” or “different ” from my peers, never bothered me either… it hurts to realize my child feels less than because she’s autistic. .. she needs acceptance from her peers and community, zhe barely receives tolerance

  10. Christine Aguiar June 19, 2013 at 8:08 am #

    Great post we too are trying our best to help the kids in our community NOW when they need it most!
    Sophiespromise.org
    Find us on Facebook!

  11. Ashley March 13, 2014 at 2:20 pm #

    I am a special ed teacher of a vocational/functional skills program in a high school for students with Autism, ID, PDD, CP, and TBI and have been putting together ideas to spread Autism awareness for April (now I will call it acceptance after reading your post and similar comments on other sites). I was planning to post news and posters around our school and read some facts each day on the morning announcements at our school, as well as hold a dress down day for students and teachers (for a small price) to donate. I will NOT be donating to Autism Speaks after reading more about them, which I am so happy I did without blindly donating to a place that is not using it’s funds for what it claims to support. I still want to raise this money to donate, which we will now donate to either Autistic Self Advocacy Network or The Doug Flutie Jr. Foundation. My question is, does Autism Awareness month, the puzzle piece symbol, and the color blue only support Autism Speaks, or are those concepts used throughout Autism foundations and supporters? Thanks for your help.

    • OMum22 March 17, 2014 at 1:25 pm #

      Thanks for your comment Ashley – I’m going to get together some links and resources for you which I’ll also put in a separate post I’m planning.

    • OMum22 March 25, 2014 at 1:19 pm #

      Ashley, here’s some information for you. Please feel free to check out my latest post, Love Not Fear, which has some links in it to Boycott Autism Speaks (BAS). http://bit.ly/1gmFZNF As alternatives to AS, BAS recommends ASAN and also the Autism Women’s Network (http://autismwomensnetwork.org/)

      Another project that’s raising money right now to fund purchasing a tablet (currently 2) for an autistic teen or adult (folks who often are left out of the programs that get tablets to children). You can check out ‘Tone it down Taupe’ here: http://toneitdowntaupe.tumblr.com/

      I think it depends on where you live but for most autistic people I know, ‘autism awareness’, the puzzle piece and the colour blue are all synonymous with Autism Speaks. Some things to check out are: http://www.autismacceptancemonth.com/; for the puzzle piece there are links to some great resources here: http://on.fb.me/1iZkh2B and as far as the colour blue is concerned, aside from it being strongly associated with AS, it reflects the statistic that the majority of autistics are male, when in reality autism in women is chronically under-diagnosed because their autism often presents very differently.

      Hopefully this is helpful!

  12. Tdub55 March 25, 2014 at 11:56 am #

    My son is on the spectrum and I will tell you, without any reservation, that Autism Speaks has done more for my son and our family than any other organization. You will never know what they do by reading websites. I’ve read all the same ones you quote from, but which other organization lobbies so successfully for insurance reform? Autism Speaks did. Their job is not to give that money to families or to buy ipads. They buy the big ticket items that no other organization does. Like lobbyists. Which other has a rep in the freaking United Nations? None. Get out of the gimme mindset and look at the big picture. I say support, support, support.

    • OMum22 March 25, 2014 at 1:02 pm #

      Thanks for stopping by and commenting. I’m not American but if I were, I don’t think I’d be as impressed as you seem to be with the idea of AS being the Monsanto of Autism. I also confess I don’t really understand why you accuse me of being in a ‘gimme mindset’. When people donate to an organization because they believe it helps people, I don’t see anything ‘gimme’ about alerting those donors to the fact that the organization spends an inordinate amount on paying its top executives. There’s a reason Charity Navigator gives them the lowest star possible for financials – how AS spends their money sucks. Even if AS were great at managing donor’s money however, I would still find it horrifying that they are the face of ‘Big Autism’. Their messaging stigmatizes people like your son, making it more likely that autistics are bullied and abused. They have no interest in what people like your son try to communicate to them and in fact AS seeks to eradicate autism (and therefore, autistics) – why on earth would you want people like that having the ears of members of Congress?

    • K March 25, 2014 at 2:22 pm #

      And what autism speaks has done for ME, an Autistic adult, is plagiarize me, lie to me about it (thrice!), and create an environment in which it’s ok for people to say they want me not in their classes/what have you because Autism Is So Scary.

      They’re building a world for your son in which he is not a person, but seen as a burden.

      Yep very helpful.

    • chavisory March 25, 2014 at 2:24 pm #

      Unfortunately, Tdub55, when people give to Autism Speaks, they often believe that their money IS going directly to help kids and families. Autism Speaks works to give this impression. And then it isn’t what they actually do. They strip-mine resources from communities and smaller organizations by telling people that their money is going directly to help kids like theirs, but it never actually comes back as real help.

      Their *catering* budget is bigger than their family grants and services budget.

      Also, with regards to “insurance reform,” many of the therapies they’ve worked so hard to require coverage for are not what they claim to be at best and inherently abusive at worst. So.

      And I’d be more impressed with having a lobbyist in the United Nations if what they were lobbying *for* were actually in the best interests of autistic people, but it is not. It is to create a future of humanity that does not include us. They’ve persistently ignored what autistic people say about what we need, and that starts with respect, acceptance, and real quality of life supports, and Autism Speaks meaningfully supports none of those things.

    • Ib Grace (@tinygracenotes) March 25, 2014 at 2:40 pm #

      Dear T Dub,

      As an Autistic person, I’d much rather Autism Speaks did not buy so many lobbyists lobbying against the interests of Autistic people.

      As an education professor, I’d much rather Autism Speaks was not so successful at insurance “reform” manipulating insurers to accept only one form of “therapy” founded on shaky research and shakier foundational ethics.

      The little picture is damning for Autism Speaks, but the big picture is exponentially worse.

      Prof. Grace

    • Adriana March 25, 2014 at 3:38 pm #

      Actually, Tdub55, Autism Speaks wasn’t the only organization lobbying for insurance reform. The lobbying started way before Autism Speaks even existed. Autism Speaks jumped in the bandwagon and because it has the media and the marketing behind it, plus a few celebrities, it got the credit for it.

      This is all very disturbing because the only thing the so called reform does is to provide cover for a therapy that is proven to hurt autistics, and the proof is the word of autistics that have gone through such therapies.

      So, there you have it, an organization that is unquestionably powerful, using the power to steal the spotlight from smaller organizations by lobbying for something that autistics do not need or want. All of them were wrong and Autism Speaks is taking credit for a bad thing. Not very credible.

      I certainly hope the help you got from Autism Speaks was a practical one, because information-wise, your son got short changed. I am sure your son is not what the information page of the organization says he is, because no human being can be that awful.

      You are right about one thing: we can’t even imagine what they do by reading their website. And this is scary because all the money they raise is used in a way that is more hurtful than anything an advocacy group can do for the population they claim to be helping. This information is in the website. If what they disclose is that bad, imagine what they do not disclose.

    • Jennifer March 26, 2014 at 12:27 pm #

      I’d rather an organization who misrepresents me and pushes eugenics as a solution DIDN’T have the ear of our government officials. Autism $peaks uses hatespeech and fear tactics to get what they – as parents – want… NOT what is in the best interest of those of us who are on the spectrum. There are no Autistic members of the board and most of the adult Autistic community shuns Autism Speaks; they do not speak for us and we’d rather they didn’t speak for anyone on the spectrum, with the opinions and views they push.

    • Adriana Cruz April 1, 2015 at 3:25 am #

      Why the high salaries? It is not about the “gimme”mind set. It is about takers, a lot of people taking advantage of the situation using “autism”. Sorry but our kids situation became a very profitable business for a lot of people.

      • OMum22 April 1, 2015 at 12:03 pm #

        I just read the phrase “bluewashing” this morning – like “pinkwashing” in the case of breast cancer.

  13. korikisulda(コリキ) (@korikisulda) March 25, 2014 at 5:00 pm #

    Your stats may not be accurate. Going on their 2012 audit, they apparently spend /less/ on families…

    http://www.autismspeaks.org/sites/default/files/documents/2012_audit_autism_speaks_and_subs_financials.pdf

    • OMum22 March 25, 2014 at 5:13 pm #

      Thanks! I wrote this a year ago and at that time only the 2011 figures were publicly available. I took all the figures directly off the Form 990 (the tax return that charities file) for that year.

      • Ib Grace (@tinygracenotes) March 26, 2014 at 9:13 am #

        This is interesting data. My scientific “mindset” is now curious as to whether this apparent worseward trend will continue.

        Prof. Grace

      • Jennifer March 26, 2014 at 12:24 pm #

        There is also a new organization for autism support, called The Golden Hat Foundation. So far, they seem to be on the side of acceptance and advocacy, rather than shame & fear.

  14. Katebee April 19, 2014 at 9:23 am #

    Great blog, thank you. My son told me he doesn’t like Autism Speaks and a friend’s neice said she had heard it wasn’t good when my friend posted a ‘Paint it Blue’ support on Facebook, so I have been reading it up a bit just now but…I have a stupid question to ask, what is ‘AAS’? It seems everyone else knows what it is but I don’t.

    • OMum22 April 23, 2014 at 7:33 pm #

      Actually I have no idea what AAS might be??

  15. Brenda April 26, 2014 at 4:52 pm #

    I have heard the same thing and there are not many programs for autistic children

  16. Churchlady April 29, 2014 at 12:41 pm #

    Take a look at The ARC that advocates and assists people with all kinds of developmental issues. They are champions of people and their families who have autism concerns. They encourage those with autism to speak for themselves and provide help at many levels. There are national, state, and local chapters the latter helping families to secure the services they need. The ARC has been one of the primary voices for including insurance coverage for autism related concerns in the new health care programs. They may be what you need.

  17. Jade Sexton November 28, 2014 at 11:35 am #

    I know this is an older article, but I just wanted to say something. My son, who is on the autism spectrum, told me just last night that he watched a video and read about Autism Speaks. “They say I have no place in society,” he said. “It hurt my heart when I read that.

    That broke my heart, and made me cry. It has been a major challenge at times, but I wouldn’t trade it for anything. He is a brilliant, sweet, and funny 12 year old and he will do great things with his life. It makes me sick that some think this is a horrible disease that must be stopped. Why? To be more convenient for others? We need to learn from them and not make them change for us or make them feel they are less than human.

    I just blogged about this, urging people to not donate to them, and I included a link to this article, as it is very well written. Thank you.

    • OMum22 December 2, 2014 at 3:56 pm #

      Thank you for commenting Jade. I’m so sorry that your son is getting the message that he doesn’t have value because of course, as you and I know, our sons and all autistic people are valuable and important. I’m glad to hear you accept him as he is and thank you for sharing my post and spreading the word.

  18. Autism Care January 30, 2015 at 6:25 am #

    Thanks For posting ….

  19. Miguel Rivera March 15, 2015 at 8:39 am #

    What would you say about http://www.nationalautism.org ?

    • OMum22 April 1, 2015 at 12:12 pm #

      You’re probably better off getting an opinion from someone in the U.S. on that charity. I’m in Canada and they don’t operate here as far as I know? I do know that currently the only U.S. autism charities that are run by and for autistic people are ASAN and the Autism Women’s Network.

  20. Michele Christy March 31, 2015 at 10:54 pm #

    There is a wonderful organization called Surfers Healing, they take autistic kids out surfing. I’m good friends with a band called Common Sense who work very closely with this group. Not sure where they stand on financial stuff, but they’re good people, and definitely on the acceptance side. Much love to all of you.

    • OMum22 April 1, 2015 at 12:10 pm #

      Surfers Healing actually came and took my boys surfing on Lake Ontario a couple years ago. The boys absolutely loved it.

  21. Sara Bramwell March 31, 2015 at 11:47 pm #

    I agree with ALMOST everything you said. Just because they are looking for a cure DOES NOT MEAN they are saying all children with Autism are mistakes or should have been aborted or what not. To suggest that shows you are taking something too far. If we could find Alzheimer’s in a fetus, does that mean that supporting such aids/charities means we would want our love ones terminated? I have to suggest you reword such a sharply worded and aggressive statement as that is just being caused to inflame an already agitated subject. My daughter is on the high end of the spectrum, never the less I struggle daily with her just the same. I have seen, know and have heard of others who have it much harder than I. I am sure if they could find a way to help there kids not self harm, meltdown so often or have a “normal” life for there child in which they can get married, raise kids and be functioning members of society with self esteem and pride in there selves and accomplishments, THEY WOULD do ANYTHING. Every child is a gift, even an Autistic one.

    • OMum22 April 1, 2015 at 12:07 pm #

      No-one has yet been able to explain to me how a pre-natal test for autism won’t result in termination of the fetus purely due to its developmental disability. Until someone explains to me how you “cure” a neurological difference absent termination then I stand by everything I have said.

  22. Tasha April 1, 2015 at 12:07 am #

    I do support autism because my Son who is 4 goin to be 5 in June is a Non verb Autistic boy and I have a nephew with Autism too…I don’t treat my son any different then I do my youngest..I take him place and I let him point to what he want and yes he does paint when it get cowarded but I wouldn’t change my Son for the world….but people do have there own opinion….but I usually only support the ones I know that goes for it…

    • OMum22 April 1, 2015 at 12:04 pm #

      Both my children are intensely autistic. Owen is non-speaking. So yes, I support autism for personal reasons too, just not Autism Speaks.

  23. DB April 1, 2015 at 9:49 am #

    This blog post is depressing. If you honestly believe that Autism Speaks wishes your sons had never been born and that they’re some scourge on the Earth that needs to be eradicated, then I think I feel sorry for you. You have to be the most cynical person in the world to even be capable of believing that.

    That their focus is on research and treatment simply means that their priorities do not align with yours. Your priority is funding for family services to support families like yours, theirs is to fund research into autism. This dichotomy is not unique to autism, “research or social services?” is a common argument. There are people with SCIs who thought Christopher Reeve was a hero for calling for more funding for stem cell research, and there are people with SCIs who were very angry with him and took the position “I’ll never be cured or walk again, that research is a waste of money and that money would be better spent support services for people living with disability right now.” But it’s unfair and wrong to assume malice and say nasty things about an organization and the human beings behind it simply because their priorities do not align with yours.

    Instead of just saying, “I don’t donate to Autism Speaks because I believe more resources need to be spent on supporting families, but I respect that they care about people with autism just as much as I do,” you’ve gone on the attack. I’m particularly bothered by what you’re saying about their budget. Technically you’re telling the truth, but you’re manipulating the figures to make it seem as though the organization is a scam that’s just enriching the people running it. The real reason they spend “so little” (and I put those words in quotes because it’s still a lot of money) on family services is because most of their money is going to fund research. And as I said, that’s just as legitimate a priority as what you care about. You should disagree with their priorities without deliberately mischaracterizing them as an unethical fundraising scam. In reality, charity watchdog groups give Autism Speaks an excellent rating on Administrative Expenses. They’re keeping costs down just like they should and not wasting money on excessive compensation. So the issue isn’t that they’re spending FIVE TIMES more on compensation as they are on family services, because there’s a really good reason for that: they’re not focused on funding family services, they’re focused on funding research. Why do you have to be so hostile to them for that?

    Regarding those alternative organizations that you’re telling people to support instead, how many staff members do they have making over $130,000? Do you know? Did you even bother to look it up at all? Of course not, because their priorities align with yours so you’re not looking for ways to undermine their credibility.

    Nobody’s telling you that you need to change your own priorities. But you need to have respect for those who care about issues as much as you do but prioritize different aspects of that issue. Because turning on each other doesn’t help anybody. And for God’s sake, please reconsider the meaning behind their Mission Statement. You couldn’t have gotten it more wrong.

    • OMum22 April 1, 2015 at 12:02 pm #

      “This post is so depressing” – starting your comment by using ableist language doesn’t get you off to a good start. Mental and psychiatric disabilities aren’t adjectives.

      If you honestly believe that pre-natal testing for autism won’t result in the termination of autistic fetuses purely due to their autism, I think I feel sorry for you. Wanting to eradicate autism really does mean that you want to stop autistic people being born. How else do you suggest AS is going to rid us of atypical neurologies? Oh and by the way, I support a woman’s right to do whatever she wants with her body but no, I don’t support organizations who want to eradicate disabilities in the same way that I wouldn’t support organizations who want to eradicate based on sex.

      If AS cared as much about autistic people as I do, they would listen to them. They would have autistic people on their board. They would employ autistic people. They would not have mothers of autistic children suing them because they would not offer accommodations for employment. They would not plagiarize autistic adults and deny it, for year. Their supporters would not tell autistic people to ‘go run under a bus’. They would not produce material that promotes fear and hatred of autism, contributing to a culture in which parents and caregivers feel that murdering disabled children is an option. Instead of coming into my space to denigrate what I have to say, why not spend your time reading more about this issue so you understand that AS has a long and problematic history and that countless examples abound that demonstrate, at an organizational level (and for many of the individual people involved), AS simply does not care about autistic people. At all.

      As far as finances go, I haven’t manipulated anything – I’m reporting numbers and percentages taken from their tax filings. And, by the way, it hasn’t gotten any better. The point you’re (I suspect deliberately) missing is that AS fundraises on the premise that funds will be used to help autistic people and their families. That’s why people give them money – because they think AS is helping. But instead of spending the money on services that will make an enormously positive impact on the lives of autistic people living right now, they spend it on trying to prevent future autistic people being born. I want to ensure that the public is aware of that fact before they donate.

      And you’re completely wrong by the way about AS getting great watchdog ratings – Charity Navigator currently gives AS 2 stars out of 5 (in previous years it was as low as 1 star) for it’s financial management.

      I listen to autistic people. Autism Speaks and apparently, you, don’t. I’m not turning on AS, AS has deliberately, systematically and repeatedly, turned its back on autistic people. I want to ensure that people know that before donating to or supporting an anti-autistic organization.

    • Tyler February 27, 2016 at 4:09 am #

      I’d like to inform you about something since you think you know it all. I’m an 18 year old autistic male and I’m here to tell you that I’m not for Autism Speaks either. You can ramble on all you’d like about how they’re supporting autism, but what evidence do you have? That’s right. None. You can stop your ableist language too. It’s utterly atrocious. I despise people who use that harsh tone. If I were you, I’d question AS as a group because as OMum22 said, they portray autism AND autistic people in a negative light. Do some researching, madam. Thanks! 🙂

      – Tyler

  24. Adam Bauserman April 1, 2015 at 4:23 pm #

    I see your stance and understand your perspective.The only thing that I would ask is promote the use of People First language. I don’t have an Autistic son, I have a son with Autism. He is not defined by his disability but by who he is as a person. Thanks for sharing the info and your thoughts.

    • OMum22 April 1, 2015 at 4:28 pm #

      Thanks Adam. The autistic adults I know (and many disabled people in general) prefer identity first language and out of deference to their preferences, I use that. I can put some links here later so you can read more if you are interested.

  25. Rebekah McClelland April 2, 2015 at 7:37 am #

    Yes. Yes. And YES.
    I am on the spectrum as are my two boys. I am of the firm belief that it is an evolution of sorts, a new way of thinking.
    Do we have struggles? Absolutely.
    Do we need “cured”? No thank you.

    Thank you so much for writing this.

  26. Jennifer April 2, 2015 at 8:52 am #

    Great thoughts; however you state…They don’t spend money in ways that would actually support autistic people and their families. I would say they are NOT autistic people but people WITH autism. They are a PERSON first.

    • OMum22 December 19, 2016 at 7:00 pm #

      Most autistic adults I know prefer identity-first language which is why I use it.

  27. Nick Benetos April 2, 2015 at 2:20 pm #

    Fuck you

    • OMum22 April 2, 2015 at 5:11 pm #

      I normally don’t approve abusive comments but given yours is so pithy…

  28. Shannon Gay April 2, 2015 at 2:42 pm #

    I was very interested in reading your blog, however I found myself getting distracted by the fact that you neglected using people first language. It is not “Austistic people”, but rather ‘people with Autism’. This may seem not-picky, but by it is offensive to identify people with any type of disability in this way.

    • OMum22 December 19, 2016 at 7:01 pm #

      This is not a result of benign neglect; using identity first rather than people first language is intentional on my part because most autistic adults I know prefer it.

    • Rebekah McClelland December 19, 2016 at 7:49 pm #

      Shannon, I am autistic and I most definitely prefer to be referred as such. Many autistic adults prefer it and are actually quite offended by person first language.
      It implies that our autism is a flaw or a sickness.
      A lot of us know that being autistic is a part of who we are and we wouldn’t change it.
      We don’t “have” something.
      We “are” something.

  29. Rickesha April 3, 2015 at 10:11 am #

    Thank you for pointing this out. The majority of us are not going to do the research. I think acceptance is the answer. My children are not autistic and I still have to teach them to love how they are different from their classmates. Yes acceptance is the answer. None of us are the same. Embrace each other in love.

  30. Mormon Soprano January 25, 2016 at 6:24 pm #

    Thanks for this post. Great info. My daughter was recently diagnosed ASD. She’s almost 22 years old. Looking back, EVERYTHING makes sense now. It’s agonizing to me that we didn’t have this knowledge early on in her life. So many things could have been done better for her. I could have been such a better Mom, and she could have had more support through her school years. It’s maddening to me that after years of therapists and multiple meds for “ADD” and “Depression” and “Personality Disorder” and a million other incorrect diagnoses NOT ONE of those “experts” ever thought or suggested testing her for ASD. Finally, we get a therapist with an Autistic child and an Autistic Brother in law and she sees it.
    I’m so happy that your children have a Mom that understand them and advocates for them. They will be able to receive early interventions and advocacy, and you will be able to provide a calm and supportive home environment.
    My daughter has thrived just by finally understanding WHY she is who she is and why she processes information differently. It’s been empowering for her to research ASD. She has also researched “Autism Speaks” and has been very angry about their hidden (and not so hidden) agendas and what a disservice they are doing to the ASD community. She wasn’t quite able to explain to me why we should not support them. Your post explains it perfectly. She will be very happy to read your post and I know it will help her feel validated.
    Keep up the good work.

    [P.S. Just as a tip, your comments are so faint on the page I cannot read them. I think choosing a darker font color would be very helpful. Cheers!]

  31. notginnandtonic March 2, 2016 at 7:34 am #

    This is so lovely to see coming from a parent, this is so great for your boys that their parent is so tuned in like it kind of made me cry a bit cos I thought you were just writing this for yourself perhaps as an autistic person but to know that you are writing this as a neurotypical parent is really touching (that sounds really trite but I mean it) because it shows that understanding and true empathy and respect is possible not just for people who are the community, but people who are advocates too. I’m really glad for your boys and wish you the greatest happiness. Xx

  32. Claire McLean March 17, 2016 at 4:30 am #

    Im usually very careful about who/what i support and I have to admit that i didnt put much time into a background check for this society…it seams to me it should be called autism removed research as a honest account for its goals. Thank you for collecting the data and putting it into the one article. I couldnt imagine my daughter being anything other than who she is (as hard for the both of us as it is sometimes) and often think that maybe the world actually needs change so much that its evolving us as humans this way.

  33. faviola March 20, 2016 at 10:25 am #

    Thank you so much for all this useful information.every year I buy a new light bulb & light it up blue. Sadly I’m not too sure this year.

  34. lorraine murray March 31, 2016 at 12:50 pm #

    I really appreciate your blog post. I work with kids on the spectrum and it has bothered me from the very beginning of this that many who are neurotypical want these kids to be cured.

    In the work we do, we just want to give them the tools to surf the challenges of life.

    I think that when we want someone to be different, it’s a great moment to turn the mirror on ourselves and ask why!

    Keep up the great work.

    Lorraine x

  35. Michelle April 1, 2016 at 12:14 pm #

    Very well wrotten mumo2. I agree it was up ibtil a few mnths ago i actually thought AS was ok until i looked further in and realised they want to basically “eradicate” autism. Very sad considering they say they have our autistic children and adults interest at heart. I’m in Australia and we have AMAZE used to be Autism Victoria. Fantastic organisation h r lp families and children alot and all monies they receive from donations etc… goes into helping families. They have workshops counsellors camps are organizes and alot more. I only suppirt light it up blue for Autism Victoria and my sons who are on the spectrum:) Thank you for such a well written article. Keep up great work

  36. Shirley Jalbert April 1, 2016 at 3:26 pm #

    In BC Canucks autism network is so worthwhile and help the kids in sports and activities with the money earned from their walk In Vancouver,BC on April 24

  37. Kerry Anne Elliott Dusablon April 2, 2016 at 8:24 am #

    After reading your blog I was disappointed in autism speaks as a parent of a 7 year old with pdd and a aunt to 2 kids 1 with aspbergers and tourrettes/aspbergers combo I am for acceptance more than awareness even though I understand not all people are that way

  38. Kerry Anne Elliott Dusablon April 2, 2016 at 9:31 am #

    Kerry here again I forgot to add that my 7 year old is also nonverbal and thinks like her 5 year old brother who has adhd

  39. Kerry Anne Elliott Dusablon April 2, 2016 at 9:39 am #

    Me again lol to all of you that got you were odd I wish my kids got something that nice I was informed that my daughters autism meant that it is OK to be lazy and my son’s Adhd is OK to be rude and bad behavior and people have told me that they can’t relate to my daughter and feel uncomfortable with her and due to Co workers who were jets we are now a 1 income family ( I am not trying to get pity and I am definitely not acting all high and mighty like I am better than everyone else is -Anthor thing we have been told)

  40. Proud mummy of autistic child April 2, 2016 at 3:13 pm #

    Totally agree …….. Autism is not a disease and we don’t need a cure, just acceptance.

  41. Lissette April 2, 2016 at 10:27 pm #

    Interesting! Have you gotten any responses from the AS?? I do love how you call it acceptance!

  42. Veronica Jonsson April 3, 2016 at 6:12 pm #

    Hi
    I am a asperger woman who has been called the devil and a fraud, devil because the one who said it said that God would never give anyone aspergers or autism.
    The fraud claim was because I can communicate and write like a “normal” person and her asperger son could not so I had to be a fraud.

    The doctor who gave me the diagnose said that she had Never seen such a clear asperger in her professional life. And it is common knowledge that women does’nt get as bad as males And all the studies have been done on males.

    I design and make jewelry and I am giving half the winnings to autism research.
    I had never heard about this organisation, maybe because I am swedish or maybe I am bad at searching, I dont know but what you have helped me to do is to not give any of the jewelry winnings to this organisation.

    I might be wierd but I have been through so much because of my aspergers and it has made me to the person I am today. And I would only change two things… My last two boyfriends.

    Thank you so much for giving me this information. It is well needed that people get to know these things.

  43. Flern Derp April 10, 2016 at 7:13 am #

    The color scheme on this page is pretty bad. I stopped reading the comments after the second comment. My eyes are just not that good, I guess.

    • OMum22 April 15, 2016 at 3:47 am #

      I’ve been playing with the colours! I took a look at the site on mobile and gosh, yes, the comments are illegible. Apologies for that – I will work on it. Thank you for alerting me to this.

  44. Michelle June 27, 2016 at 9:49 am #

    I agree, Autism speaks doesn’t help families with needed equipment like similar charities. When my aunt had ALS she got a free wheel chair. My seven year old autistic son needs a a large stroller, been trying to get it for two years. Not the kind of person who puts up a go fund me page.

  45. Joey April 2, 2017 at 10:45 am #

    Thank you very informative and well said. There is no cure for perfection our daughter is perfect just the way she is.

  46. Tamsin Parker April 26, 2017 at 4:08 am #

    Well, April was my birth month first. That’s why the month is important to me, nothing more.

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