Last month, my 5-year-old daughter told me that her after-school program was raising money for Autism Speaks. She was excited because (as explained via emails and fliers from the school), the fund-raiser would take place at a local ice cream store and all her friends would be there. The money would go to support a particularly beloved teacher running the New York marathon on behalf of the charity. My daughter, very excited, asked if we could go.
I was faced with a dilemma. I am not a fan of Autism Speaks, but I didn’t know how hard to push my values. An ice-cream-cone-size donation is honestly not that big a deal. Was it worth making Ellie feel like an outsider, excluded from the group activity, over my dislike of the mega-charity?
Autism Speaks is a wealthy charity dedicated to helping people who “struggle” with autism, funding research into “prevention, treatments and a possible cure.” They are widely criticized for their mission, their rhetoric, the makeup of their leadership, and the way they use their funds. The most important criticisms come from autistic individuals, who see the charity as “eliminationist” – seeking to eliminate autistic people. The Autistic Self-Advocacy Network has adopted the motto “nothing about us without us,” in part to criticize the lack of autistic leadership in Autism Speaks. Autistic bloggers condemn the “light it up blue” campaign for “autism awareness” that takes place every April, because they want acceptance, not awareness.
As a journalist, activist and father of a boy with an intellectual disability, I am connected to the autistic community and write about issues related to disability, language and identity. I have yet to meet an autistic person, either virtually or face-to-face, who supports Autism Speaks. I respect that and share their concerns. But was it worth making my 5-year-old miss out on going to the ice cream store with all her friends? Would she understand, or just be upset and feel excluded?
When she asked about the fund-raiser a second time, I told her that I didn’t agree with the goals and methods of Autism Speaks. She replied, “But aren’t they trying to stop autism?” I answered, “Yes, but I have a lot of autistic friends who don’t want to be stopped.” “Really?” she said, surprised, but willing to think about it. On the day of the event, my wife made the analogy that Autism Speaks was like an organization run entirely by boys, that got lots of money for saying that girls were bad and had to stop looking or acting like girls, and didn’t have any girls involved. Our daughter agreed that this was indeed a problem, especially after we promised to take her out for ice cream at a different store.
Then, with great hesitation, I wrote the school, fearing that I would become a problem parent. The director quickly wrote back to say the she had never heard about the controversies, thanking me for the information, and promising to share it. Even better, the marathon runner emailed me and explained that the marathon has a finite list of charities, so she picked the one about Autism because she had worked with autistic children.
She wrote (quoted with permission), “The year after I graduated college, I worked in several special needs classrooms and last year I had a little girl with autism in my classroom. I saw several forms of therapies she went through. Certain ones distressed her, others guided her in her natural environment. I witnessed a family last year struggle to find a “cure,” but I, in turn, helped them realize what an amazing, brilliant, happy child they were blessed with.”
In other words, the teacher is also concerned about an over-fixation on “curing” rather than acceptance; she just didn’t know that put her in opposition to Autism Speaks.
These kinds of debates about charities and other N.G.O.s are pretty common. Adoptive families raise concerns about UNICEF; cancer patients protest actions by the Susan G. Komen charity. They also tend to be insider discussions, in which people inside communities write angry screeds, but have trouble getting their concerns aired in wider arenas. Charities can easily sound fine to the casual observer because who is against trying to do some good in the world, whether it’s helping kids with autism, or fighting cancer, or protecting kids?
In the end, this wasn’t about the specific debate over Autism Speaks, but about my own decision not to remain silent about my views. The only way to let people know about the issues with these charities, of course, is by speaking up. Sometimes, doing so may cause tensions, but those I engaged here seemed, in general, to be pleased to be provided with more information.
I hope that’s the lesson my daughter takes from this — that standing up for one’s beliefs can be uncomfortable, but is necessary, and sometimes works out really well. Especially if there’s a big scoop of ice cream — somewhere else — at the end.
Autism Speaks has done some amazing things in my area. I work with several children with autism in my PT job and all of the families speak very highly of the organization. I have a feeling this varies widely depending on the chapter/area.
I don't think any organization is without fault-I'm not sure locally if there is any leadership with autism, though that is good food for thought.
I need to come back when I've managed to gather up my thoughts because the idea that we're going to get semantic about a spectrum disorder that DOES require treatment and a program that encourages early treatment for the best outcome is making me feel some kind of way.
I'm not touching the issue with the charity, because I really don't know anything about it.
I will say that if a charity does not hold with your views, DO NOT DONATE. It's ok to be the oddball out.
It sounds like a similar debate to what goes on in the deaf community, if it's okay to make a deaf child hear instead of I guess teaching them to deal with being deaf.
Except that's what Autism Speaks is trying to do, teach children and adults to deal with being on the spectrum, by making treatments and therapies available to them.
So idk. I mean I don't have a child on the spectrum so I'm a total outsider to this discussion but his opposition seems rather knee jerk and not at all comparative to the disagreements he mentioned within UNICEF or Susan G Komen.
Because of the nature of the organization I work for I'm not going to get into my opinions of Autism Speaks other than to say that in general I think all nonprofits should have someone on their board of directors that either recieves services, is a client, etc. The two HIV/AIDS related organizations I worked for each had clients/openly HIV+ board members. This organization has people we support on the board. I believe it makes for a better board and I'm suprised a place like Autism Speaks doesn't have a person with Autism on theirs.
I've heard about this controversy. I think autism becomes a stable part of one's identity rather than a disease to be fought against for many people who live with it. I can see how an organization dedicated to 'curing' something you see as part of your identity could be off putting. It's a tough issue, but I think it's pretty ironic for an organization that calls itself Autism Speaks to silence the voices of adults with autism.
I'm not touching the issue with the charity, because I really don't know anything about it.
I will say that if a charity does not hold with your views, DO NOT DONATE. It's ok to be the oddball out.
It sounds like a similar debate to what goes on in the deaf community, if it's okay to make a deaf child hear instead of I guess teaching them to deal with being deaf.
Except that's what Autism Speaks is trying to do, teach children and adults to deal with being on the spectrum, by making treatments and therapies available to them.
Some autistic people make the argument that they don't need treatment or therapy, and that Autism Speaks continues the notion that there's something wrong with them that needs fixing. Instead, they want the message to be one of difference, rather than deficiency.
Post by lyssbobiss, Command, B613 on Jun 4, 2015 12:21:17 GMT -5
I...uh...huh. I mean, charities all fuck some shit up and never use their funds how I want them to. Whatevs. But, am I missing the outrage over an organization that looks for treatment, prevention, and cures? Am I somehow ASD-negative for wishing there were a cure? I mean, guys. You know me. I love my son with every fiber of my person, I think he's amazing and smart and all of that, but it doesn't mean that at least once a day, I don't wish we had a treatment or a cure or even a better understanding. I feel okay as a SN mom wanting those things.
I believe Autism Speaks did have a person with ASD on their board and he resigned a few years ago because he was unhappy with the direction of the organization, but I don't fully understand the issues, to be honest.
"This prick is asking for someone here to bring him to task Somebody give me some dirt on this vacuous mass so we can at last unmask him I'll pull the trigger on it, someone load the gun and cock it While we were all watching, he got Washington in his pocket."
I...uh...huh. I mean, charities all fuck some shit up and never use their funds how I want them to. Whatevs. But, am I missing the outrage over an organization that looks for treatment, prevention, and cures? Am I somehow ASD-negative for wishing there were a cure? I mean, guys. You know me. I love my son with every fiber of my person, I think he's amazing and smart and all of that, but it doesn't mean that at least once a day, I don't wish we had a treatment or a cure or even a better understanding. I feel okay as a SN mom wanting those things.
I believe Autism Speaks did have a person with ASD on their board and he resigned a few years ago because he was unhappy with the direction of the organization, but I don't fully understand the issues, to be honest.
Many people with ASD and some ASD parents (myself included) have major concerns with the fear mongering they use to raise funds, my daughter is high functioning enough to understand the commercials and the last thing she needs is to be told that something that is a part of her that she can't change is causing our family hardship/damage/heart ache It is no different then telling a gay child that what they are is wrong and needs to be changed. I am fully supportive of treatments (she gets intensive ABA), and research and would love a cure but I am not OK with publicly shaming my sweet girl for who she is.
I...uh...huh. I mean, charities all fuck some shit up and never use their funds how I want them to. Whatevs. But, am I missing the outrage over an organization that looks for treatment, prevention, and cures? Am I somehow ASD-negative for wishing there were a cure? I mean, guys. You know me. I love my son with every fiber of my person, I think he's amazing and smart and all of that, but it doesn't mean that at least once a day, I don't wish we had a treatment or a cure or even a better understanding. I feel okay as a SN mom wanting those things.
word for word.
and really, is it so out there to support people with ASD while searching for a way for others not to be born with it in the first place?
It sounds like a similar debate to what goes on in the deaf community, if it's okay to make a deaf child hear instead of I guess teaching them to deal with being deaf.
Except that's what Autism Speaks is trying to do, teach children and adults to deal with being on the spectrum, by making treatments and therapies available to them.
Some autistic people make the argument that they don't need treatment or therapy, and that Autism Speaks continues the notion that there's something wrong with them that needs fixing. Instead, they want the message to be one of difference, rather than deficiency.
This explanation clarifies things. I've seen comments from members of the deaf community that said the same thing, especially with regard to things like cochlear implants.
I...uh...huh. I mean, charities all fuck some shit up and never use their funds how I want them to. Whatevs. But, am I missing the outrage over an organization that looks for treatment, prevention, and cures? Am I somehow ASD-negative for wishing there were a cure? I mean, guys. You know me. I love my son with every fiber of my person, I think he's amazing and smart and all of that, but it doesn't mean that at least once a day, I don't wish we had a treatment or a cure or even a better understanding. I feel okay as a SN mom wanting those things.
I believe Autism Speaks did have a person with ASD on their board and he resigned a few years ago because he was unhappy with the direction of the organization, but I don't fully understand the issues, to be honest.
Many people with ASD and some ASD parents (myself included) have major concerns with the fear mongering they use to raise funds, my daughter is high functioning enough to understand the commercials and the last thing she needs is to be told that something that is a part of her that she can't change is causing our family hardship/damage/heart ache It is no different then telling a gay child that what they are is wrong and needs to be changed. I am fully supportive of treatments and research but I am not OK with publicly shaming my sweet girl for who she is.
I don't want to be obtuse - I am not sure I have even seen a commercial for Autism Speaks. I would definitely remember seeing one that indicated at all that Babycakes was a burden or that I'm heartbroken over his condition or anything. Tired, impatient, broke, sure. All of those things, many times a week. I'm sorry, I didn't realize you all were encountering these ads.
"This prick is asking for someone here to bring him to task Somebody give me some dirt on this vacuous mass so we can at last unmask him I'll pull the trigger on it, someone load the gun and cock it While we were all watching, he got Washington in his pocket."
Many people with ASD and some ASD parents (myself included) have major concerns with the fear mongering they use to raise funds, my daughter is high functioning enough to understand the commercials and the last thing she needs is to be told that something that is a part of her that she can't change is causing our family hardship/damage/heart ache It is no different then telling a gay child that what they are is wrong and needs to be changed. I am fully supportive of treatments and research but I am not OK with publicly shaming my sweet girl for who she is.
I don't want to be obtuse - I am not sure I have even seen a commercial for Autism Speaks. I would definitely remember seeing one that indicated at all that Babycakes was a burden or that I'm heartbroken over his condition or anything. Tired, impatient, broke, sure. All of those things, many times a week. I'm sorry, I didn't realize you all were encountering these ads.
There is one that plays locally all the damn time and it kills me. I try to catch it so DD doesn't see it.
I don't want to be obtuse - I am not sure I have even seen a commercial for Autism Speaks. I would definitely remember seeing one that indicated at all that Babycakes was a burden or that I'm heartbroken over his condition or anything. Tired, impatient, broke, sure. All of those things, many times a week. I'm sorry, I didn't realize you all were encountering these ads.
There is one that plays locally all the damn time and it kills me. I try to catch it so DD doesn't see it.
I've heard of it and also don't know enough to weigh in but I commend the father for explaining his views to his daughter and the school. It would have been a lot easier to just say "yeah let's have ice cream" especially because it's not as cut and dry as going to an Pro Life ice cream social.
Autism Speaks is pretty controversial for a number of reasons a few people touched on.
Some of their PSAs that liken autism to kidnapping for instance. DS finds these pretty offensive.
Their minimal spending on actual services for families with ASD (4% compared to 5% for salaries- they do pay some princely wages).
I was sort of surprised so many here have benefited from their services, aside from their excellent First 100 Days publication, I don't know of anything they've done locally to improve the lives of individuals with ASD in my community or those of my fellow ASD-mom friends in various states around the country. I wonder if Autism Speaks is getting credit for work being done by The Autism Society of America, Flutie Foundation, Dan Marino Foundation, Easter Seals or some other group.
Post by aussiecrush on Jun 4, 2015 13:06:54 GMT -5
When the co founder of an ASD charity says that those of us with family members on the spectrum aren't really living, I'm going to question the hell out of everything they are doing. My boys are high functioning, so my idea of a "cure" looks different than it would for people in a different place on the spectrum. We wil not participate in anything Autism Speaks does, their message doesn't match our family or it's needs. It does bother me that they are the face of autism, The Autism Society of America gets our donations nationally but I urge my friends who are supportive to donate locally.
DD received and iPad from Autism Speaks. I actually had no idea it was controversial either. I have a lot of feelings about the comparison of being deaf to ASD. Our neurodevelopmental ped believes strongly that there will be a cure, and I know this is a very unpopular opinion. This is a stupid jumbled post, hahahaha.
I...uh...huh. I mean, charities all fuck some shit up and never use their funds how I want them to. Whatevs. But, am I missing the outrage over an organization that looks for treatment, prevention, and cures? Am I somehow ASD-negative for wishing there were a cure? I mean, guys. You know me. I love my son with every fiber of my person, I think he's amazing and smart and all of that, but it doesn't mean that at least once a day, I don't wish we had a treatment or a cure or even a better understanding. I feel okay as a SN mom wanting those things.
I believe Autism Speaks did have a person with ASD on their board and he resigned a few years ago because he was unhappy with the direction of the organization, but I don't fully understand the issues, to be honest.
DD received and iPad from Autism Speaks. I actually had no idea it was controversial either. I have a lot of feelings about the comparison of being deaf to ASD. Our neurodevelopmental ped believes strongly that there will be a cure, and I know this is a very unpopular opinion. This is a stupid jumbled post, hahahaha.
I wasn't trying to compare being deaf to having ASD. Just that I've heard similar "we don't need to be fixed" sentiments.
I didn't either until a friend who has a daughter with autism told me she didn't agree with them when I sent her a link on something from their FB page. She also cited their lack of representation on the board, whether it be someone with autism or a family member who has been directly impacted by it.
I didn't either until a friend who has a daughter with autism told me she didn't agree with them when I sent her a link on something from their FB page. She also cited their lack of representation on the board, whether it be someone with autism or a family member who has been directly impacted by it.
Bob and Suzanne Wright founded Autism Speaks after their grandson was diagnosed in 2005. There was a time when their daughter, mother of the grandson with ASD, was at odds with them publicly over the direction of the organization.
It sounds like a similar debate to what goes on in the deaf community, if it's okay to make a deaf child hear instead of I guess teaching them to deal with being deaf.
Except that's what Autism Speaks is trying to do, teach children and adults to deal with being on the spectrum, by making treatments and therapies available to them.
Some autistic people make the argument that they don't need treatment or therapy, and that Autism Speaks continues the notion that there's something wrong with them that needs fixing. Instead, they want the message to be one of difference, rather than deficiency.
But, I believe it would be a huge disservice to children and adults with ASD (who may want, or who's parents want treatment) to offer no treatment.
Not people with hearing impairment need treatment, not all people with ASD need treatment, some do. Not all people with depression and heart disease need treatment, some do.
I have seen children with ASD who receive treatment who appear more content than before treatment. Those children are still loved for all the uniqueness they bring to the world.
I also think acceptance and awareness go hand in hand
Thank you for this post and for everyone's comments. My workplace has been fundraising for Autism Speaks for years and hosts their annual walk. I've always supported this without doing any further research. This certainly changes my perspective.
this post has been on my mind since i read it yesterday. i'm having a lot of not so impressed feels on it, and it's not towards AS.
i'm rolling my eyes that AS is considered a eugenics society. preventing a (likely) genetic issue that is a known hinderence in dealing with every day issues in society isn't eugenics. and it's not offensive to the people with the (likely) genetic issue. why can't people say, "i love you but i'm also going to work to see that the struggles you face every day don't have to be faced by another person."? i was born with a genetic issue and would LOVE it if people worked to end it. that doesn't mean i think people wish i hadn't been born.