Sesame Street has always been a place where children of all walks of life, colors and disabilities can go and find camaraderie and good times. Diversity is embraced and celebrated on Sesame Street. When the autistic community found out that the show was partnering with the organization Autism Speaks, there was so much disappointment that a petition has been started asking Sesame Street’s producers to reconsider their decision.
As it turns out, there is even a Boycott Autism Speaks movement. Apparently, the organization not only spends very little of the money it raises on actual services for autistic people, but the language they use for their fundraising efforts is full of fear mongering and imagery that does not fairly represent the autistic community.
The key issues with Autism Speaks include, but are not limited to: having no autistic board members, more funds go into research to eradicate the disorder rather than helping those with autism, only 3 percent of their revenue is spent on services and they use scare tactics to inspire people to donate money by portraying autism as a tragedy.
Besides some extremely dubious practices, Autism Speaks and similar organizations, have become outmoded forms of autism advocacy. For the most part, people with autism are proud and fully embrace their differences from the neuro-typical population. Parents of autistic children are also quite fond of their kids’ eccentricities. One mother stated that she does not think she would know how to deal with an average child, “It would be so boring.”
Rather than attempting to wipe out autism by assimilating children to some arbitrary idea of normal behavior, or worse yet, molding them into typical model children, many families affected by autism are taking a different approach. Parents are accepting the paradigm shift brought on by raising an autistic child. This alteration in thinking has not caused tragedies but has instead inspired enlightenment. The ability to speak out with a united voice is just one manifestation of this phenomenon.
Adults with autism are rallying together against the collaboration between a show they grew up with and an organization that does not speak for them. Amy Sequenzia, an adult with autism, has asked Sesame Street to not join up with a group that routinely silences autistic people. She wants all autistic children to grow up feeling proud of who they are.
Lei Wiley-Mydske is not only an autistic adult, but has an autistic child. She told the makers of Sesame Street that if they truly wish to celebrate diversity, they need to end their partnership with the much maligned Autism Speaks. Messages of fear and despair are misleading and labeling autism as something shameful is how the organization has made all of its money. She goes on to say that autism is essentially a different way for brains to interpret the world. Stories deserve to be told by the people who experience them. Wiley-Mydske pleads with the producers to not aid in the continuation of Autism Speaks dominating the conversation with their harmful rhetoric.
The autistic experience is an opportunity for people to learn and grow. It is a wake up call to a society that has relied too heavily upon antiquated ways of approaching children, spirituality and education. Groups like Autism Speaks need to either make some major changes by catching up to the rest of the movement or throw in the towel. Until they do, the autistic community will continue to request that important businesses and institutions, like Sesame Street, sever ties with Autism Speaks.
Opinion By Stacy Lamy
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33 Responses
You are a very persuasive writer. I can see this in your article. You have a way of writing compelling information that sparks much interest.
Ipad = overpriced Apple gadget… Android available on cheap devices…definite help. I can even make apps, so as a developer please tell me what you need exactly… P.S. I am on-the-spectrum myself so understand the need for this. I am HFA though…so you have to BE CLEAR about your needs.
well there seem to be valid reasons to not like autism speaks, but it could have been worse, much much worse.
at least autism speaks supports vaccination
I AM part of the autism community.. not the aspie hate group for anything to do with help.. but the real community and I FULLY support sesame streets partnership with autism speaks. We NEED help! We need research and cures!!!!!! So do not think that “community” is everyone but a few minor people with nothing better to do with their time than hate
Totally agree!
As I said in an earlier comment, “improving quality of life for autistic people who can’t function independently should be a primary focus of the autism advocacy movement.” That means that I, even though I am an aspie who disproves of the Autism Speaks partnership, agree with you that autistics who need help should be able to get it! This is not about opposing research, or even VOLUNTARY “cures” (although I don’t believe a cure is possible, per se). This is about treating people on the spectrum as individuals with individual needs, and making sure that everyone is treated with respect and dignity and a presumption of competence. Autism Speaks views autism as a tragedy, and treats autistic individuals as problems to be solved instead of people to be worked with and respected. That’s the problem with their rhetoric.
Attempting to drive a wedge between various groups of people with autism is not helpful for anyone. I am personally offended by your implication that aspies or “high-functioning” autistics (even though I don’t like functioning labels, either) are not part of the “real community” of autistics. I don’t hate you — I support your desire for help, and I hope you get any help that you want and need. I just don’t think Autism Speaks wants to provide that help, and I want Sesame Workshop to realize what they’re supporting when they partner with Autism Speaks.
My 10 year old son is severely autistic and non-verbal, although he has recently learned to type. He types often that “I HATE AUTISM” and “I HATE BEING AUTISTIC”. He types that “AUTISM STEALS MY VOICE AND MAKES ME LOOK STUPID.” His words, not mine. He will sometimes cry big tears of frustration at not being able to be normal, to have friends, to do what his brothers can do. He begs me, via typing, for a medicine to FIX his autism. My point is, not everyone with autism LIKES being autistic. Some people with autism, especially low functioning autism that makes their lives beyond difficult, wish, more than anything, that they could be cured. While I understand how some individuals with “higher functioning” autism find their condition and way of thinking a benefit to their lives, like anything, not all individuals do.
You can’t cure a developmental disability. The only cure autism speaks seeks is eugenics, because the only way to cure it is to prevent it from happening to begin with, and since evidence points to autism existing in-utero, the way to prevent it from happening is amniocentesis and abortion. It’s like finding a cure for Down’s Syndrome.
As far as treatment? Services? Those are things that we’re all fighting for, just like you. That’s where we want fundraising targeted at. Not spent on high executive salaries, fundraising and advertising that demonizes autistics, and further research into the heavily discredited MMR stuff.
Even if there is no benefit at all to autistic neurology for some, there’s definitely no benefit to spending funds raised claiming they’re helping your son, while putting out awareness videos talking about wanting to kill her daughter and herself, in front of her daughter. https://www.youtube.com/watch?v=C7NTfZzS9b8
This is what we’re speaking out against.
BS
That’s so sad! 🙁 I hope you and your son can get some help, so he’s not so miserable. If he reads, show him blogs and websites of other “low-functioning” but typing-communicative autistic people, or read them to him if he’s not capable of reading them himself. He should know that he’s not alone, and that things can improve for him! Since there’s NOT currently a “cure” for autism, I hope you and he can find some way to make him happier with his situation. I recommend the Tumblr http://autismpositivity.tumblr.com/, for some happier depictions of autism than he’s probably been seeing most of the time.
If he is communicating, he has a voice. It’s your job to build him up. Teach him that verbal speech is not the only form of communication that matters, because it is not. Teach him to embrace and be proud of every part of himself. Autistic culture, Autistic pride, Disability pride, those are things and you should put your son in contact with other Autistic & Disabled people so that he can experience those things.
I feel very sad for you son that he does not love himself for the wonderful person that I am sure he is. Perhaps you should read the blog of Amy Sequenzia, one of the Autistic people mentioned in this article. She is non speaking as well, and she is full of Autistic pride and is a wonderful activist. She often writes for Autism Women’s Network and Ollibean. Her blog is nonspeakingautisticspeaking.blogspot.com
Fix ableism and a culture that views Disability with disdain and does not support the needs of Autistic people. Fix a culture that teaches people that Disability is to be feared instead of accepted as a natural part of the human experience. Don’t fix your son, because he is not broken.
This is because society has taught him that the hardships he faces is because of his disability, when in fact it’s society that has made his life so hard. Kids don’t just decide to “hate autism” They learn to hate it because of messages they have been sent, told, or heard… It is your job as a parent to teach him differently…
Please read http://eccentrickimmy1.blogspot.com/2014/05/breaking-cycle.html
BS.. having autism is HARD… it has nothing to do with how much your loved or how rich or easy your life is from the outside… it’s painful and difficult physically as well as mentally
Having autism IS hard. That’s why autism activists are trying to make things easier and better for autistic people. Autism Speaks seems to be more concerned about the parents of autistic children than about autistic people themselves — and frankly, having autism AND being told that you are defective, or worthless, or that because of you your parents want to KILL themselves IS going to make living with autism even more difficult. It’s important to help autistics have richer, fuller, EASIER lives, and help them and their families deal with the difficult things that DO often come with being autistic.
According to the Autism Speaks website, they are “dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.” Notice that helping individuals currently living with autism is the last thing on their priority list.
Agreed. Funding for supportive interventions to help autistics should take precedence when deciding how to direct funds raised through this powerhouse of an organization. That is why, as a parent, I support efforts to redirect Autism Speaks to allocate more funds to the people it purports to serve.
I try to look at the long-term big picture for my teen. If he is supported well throughout his lifetime with appropriate services, many of his challenges would be alleviated, as would mine. He is who he is. That is not going to change. But how he is able to live his long life is determined by how we, as a society, choose to view him. I choose to accept him for who he is and advocate for others to do the same. That does not mean I am absolved of my parenting role in raising him to be kind, respectful, and responsible. On the contrary, I take that challenge very seriously. I also recognize an important need to advocate for others to see the beauty in his difference and accept him as he is.
I hope Autism Speaks can come to see that need, as well.
He learned to hate autism via someone who hates him for his autism. If I were you, I’d turn felon on that hateful bigot. Alternately, it could be that everyone he’s met hates disabling traits he cannot separate from himself.
In any case, you’re his mother. You’re supposed to teach him how to love himself.
That said, I understand that being an autism mum is hard. Some parents are… Well, used from behind by society in general for having an autistic child until it just breaks them mentally and turns them into child killing monsters. But if you want peace, you’ll have to fight society instead of fighting against your child’s needs.
I have a 10 yr old son with autism and Autism speaks was supposedly giving away IPads for children who qualified in wisconsin. They had over 10,000 applicants and gave out only 500!!** So frustrating as a parent to need early intervention and get nothing but waiting lists/empty promises. I think it’s time to set up our own virtual library where you can check out and try AAC devices, sensory vests, visual sport tools. Free of charge and help these kids find something that works for them!
Emily your speech person can do this. they can bring in different devices and see which works best and then ask your insurance to cover it. I don’t have an ipad either but knowing 500 kids DO have one is a great thing
I want to develop a resource center for parents. I’ve worked with a lot of speech & OT therapists(10 in 2 states), most of their equipment they only let you use there during therapy. Nothing to take home. If there was a service that people could borrow sensory/support tools/weighted or compression vests for free like a public library with the knowledge of these therapists, it could help kids today, right now! I like many parents have spent countless $ just trying different things to avoid using anti-psychotic medications. I’ve seen my son progress from non-verbal to not only verbal, but spontaneous speech! Some of the things we tried didn’t work, but some did. The point is, that most people don’t have that option. I feel if there’s something out there that could help make it even a little better, then why does it have to be so hard to get access to these tools? No one can sit around for months waiting for insurance company approval, and most people can’t afford to buy sensory swings/vests etc. even if they’re in desperate need. Thank God I didn’t wait for someone to do it for me, or we’d still be waiting! SMH
Hi. I am one of the people referenced in this article. I wanted to respond to people using the ableist and demeaning “functioning labels” and dismissing me as someone who “only has Aspergers”.
First of all, I am an Autistic woman. I identify as Autistic because that is what I am. I am Disabled. I can’t drive. I get lost frequently and easily. I am unable to live alone or independently and at 38 years old, I never have. I often lose the ability to talk and have great difficulty using verbal speech in many situations. I have what would be considered “severe” self injurious behaviors at times. My anxiety prevents me from leaving the house some days, and I have been unable to work for almost seven years. What functioning label do I get? Those are some of the things that truly disable me, but that is not all I am. I am also happily married to a wonderful man. I volunteer in my community. I am a disability rights activist. I am a gifted artist and a loving mother to a beautiful child. I am all of these things.
You don’t get to decide, based on arbitrary and ableist standards that are completely made up how Autistic I am. My challenges do not define me, nor do they take away from the fact that who I am is exactly who I was born to be. Disability is a natural part of the human experience. Even Congress said so. Over twenty years ago!
Secondly, my child has intense needs and challenges and also amazing abilities and gifts. They are his own to discuss and I resent people thinking he’s not a “real Autistic” because I choose to love and accept him for the amazing person that he is. My love is unconditional and not based on how well he can perform, like a trained seal, as a neurotypical person. His life is valuable. Don’t you DARE say it’s not.
I am horrified at the idea that some Autistics deserve acceptance and some do not. Honestly, I am afraid for the children of parents who would divide us by functioning labels and say that some of us deserve dignity, respect, acceptance while those whose needs are more intense shouldn’t get that same consideration. Stop making Disabled people prove their humanity to you. It’s gross and it says a lot more about you than it does about me.
I’m glad that an article like this exists outside of the Autistic community, but please use respectful language. Otherwise you are committing the same crime as Autism Speaks by shouting over us. I am an autistic person, not a person with autism. Also, it’s a neurotype, not a disorder.
@DavieO I, too, have a adolescent. He does have “real Autism” (e.g., non-verbal, pica, tantrums, unusual repetitive behaviors). People who meet us on the street immediately and clearly understand that there is something different about him. I have come to realize that many of the “maladaptive behaviors” that he has presented with (including lack of sleep) were due to an inability to communicate a physiological or emotional need. Once we discover the cause of each need and deal with it appropriately, these behaviors subside. It is not the autism that causes him to behave these ways, it is his reduced ability to articulate what he needs.
I fully support efforts to increase acceptance of who my child is as an individual and reduce the fear surrounding his difference. Kudos to those willing to calmly articulate their needs to the fundraising powerhouse that is AutismSpeaks. Perhaps one day this juggernaut will change course and support that type of changes that I wish to see in support of my child.
Deborama3000, Thank you, you have so concisely articulated something I’ve struggled to explain for ages. Thank you.
Really, those parents and people with “Autism” really just have a form of Aspergers, very high functioning. How about having a 12 year old that yells and screams when ever you ask him to do something he doesn’t want to and gets so upset to the point of hitting his head hard enough to cause a bruise? How about a 12 year old that, for the last several years, doesn’t sleep in his own room except on rare occasions and has to sleep in our room where he either stays up until his mother and I go to bed or comes in an wakes us up between 2-3 in the morning? Are those things that parents would think a quirky or unique?? How about a 12 year old that repeats the same things from shows or songs over and over again, ever day, for weeks on end, until you want to tear your ears off? These are the things that we deal with every day. We’ve tried all types of therapies and medications and spend ourselves into near bankruptcy because of this. I for one would welcome a cure if it meant I could have a normal conversation with my 12 year old and have a normal day for once in the 9 years since he has been diagnosed with real Autism.
what if i were to tell you, as a person who has autism, that autism and aspergers is for all wants and ends, the same thing just on a different part of the same spectrum, and for all the life i remember i have spent researching the condition (i want to know more about people like myself) and every scrap of information i found point towards this result. and as for your idea on the “cure”? i say shame on you, shame on you for even entertaining the idea. autism is not something to be cured because if you do, it’ll be tearing out who the person is and replacing it with someone completely different. how would you like it if someone offered you a cure that meant you, as you are, dying and having someone else walk off IN YOUR BODY. shame on you sir, we, as the autistic, are born with it, we live with it, and we shall die with it
The difference with you and my son is you can write a response. You can read my words and comprehend them in the context of the article and what they mean. My 12 year old has no understanding of anything other than rote items, he can read at a high level, but he doesn’t understand what he is reading. He can’t take care of himself other than basic feeding and still even needs help in the bathroom. He just started taking a shower on his own this year!! He will probably die with Autism, sometime a long time for now. From what you wrote you seem to be able to take care of yourself, he will NEVER be able to and that pisses me off. Myself and his mother will take care of him until then, every day, all day. That’s why I want a cure or for someone to come along and do something for him that will make his, and yes, our quality of life better.
Improving quality of life for autistic people who can’t function independently should be a primary focus of the autism advocacy movement, in my opinion.
I was diagnosed Aspergers at 28, and I understand that I don’t have things nearly as difficult as you and your son, but a significant improvement in functioning and quality of life is not the same thing as a “cure for autism.” Yes, your son will most likely die with autism. That does NOT mean he’ll necessarily die unable to care for himself, or unable to communicate, or that he won’t improve in functionality as he gets older. He’s only 12 — obviously, he’s very developmentally delayed, from your description, but you can’t know that he’ll “NEVER be able to” take care of himself. It seems to me that finding ways to help kids like these communicate and self-care would be more useful than looking for a cure for something that isn’t universally bad.
My parents often thought I’d live with them until I was in my 30s when I was 13. It took me 5 years to learn to drive a car, and even then I only got my license because I waited until I was 18 and didn’t need their signature, then rode my bike 5 miles to the secretary of state’s office (our DMV in MI) and got my license by myself, because they refused to sign it or take me there myself. I still wasn’t allowed to drive their cars anywhere but the store, and the furthest I ever drove alone was the day I moved out (which i didn’t tell them in advance about because they tried to prevent me from leaving).
My parents were supportive, and pretty much right about my ability to function independently. I made a lot of poor decisions on my own, but I learned to persevere just like I did every other day and figure out a way to live.
I still don’t shower everyday at age 35, and regularly forget self care items. I try to remember though. But I design networks with the best of them.
Personally, I’m offended at the language used in this article to describe ‘non-autistic’ children. ‘Boring, typical, and average’
That’s how autistic people like myself feel about the language Autism Speaks has used to describe autistics: ‘tragedies, diseased (and needed to be “cured”), families of autistic people are “not living”, etc.’
Here’s the Merriam-Webster Dictionary’s definition of ‘typical’: http://www.merriam-webster.com/dictionary/typical
Here’s the definition of ‘average’: http://www.merriam-webster.com/dictionary/average?show=0&t=1402759888
While I admit that ‘boring’ does indeed sound offensive, I don’t see anything offensive about being ‘typical’ or ‘average’. To me, being ‘typical’ or ‘average’ simply means being part of the majority (i.e: not having a disability), not the minority (i.e: having a disability).
isn’t describing autistic children, high or low, as burdened like $peaks does offensive to you too?
Being offended is a good feeling. That’s how we feel when we know an objectionable idea can’t hurt us. When people say I wear too much makeup and it makes me look bad, I’m offended. When people say I shouldn’t be able to make my own healthcare decisions because I’m mentally I’ll, I feel trapped and helpless. When people say women sometimes deserve to be raped, I feel terror and despair. When trans people say hateful things about cis people, I’m offended. If I say hateful things about trans people, trans people fear for their safety. Be grateful you are offended. It is a sign your privilege is not truly threatened.
agree with you as an autistic that $peaks is not good!