I’m not blind to the extremes of the condition, although I do think that parental approach has an impact. It’s not fair to these families to dismiss the idea of prevention or a “cure”. Paul Robison describes in his letter of resignation that he choose to leave, not only because of Suzanne Wright's insulting speech, but also because no one would address his repeated concerns about seeking a cure and the lack of representation while he was employed at Autism Speaks. As we are getting close to Autism Awareness Day and I’ve seen more and more posts about it, I felt that I needed to share my thoughts on the popular autism organization. You can also reach the Autism Response Team by phone or email: 888-288-4762, en Espanol 888-772-7050, or help@autismspeaks.org. My best friend has a younger sister with autism, and ever since I found out I have been researching ever since. I really really wanted to get on board with this organization and become that mom of a child with autism with the blue puzzle piece on my car and educating people. I’m so glad you posted this! However the slower flicker in countries that use 50 HZ electricity put more children at risk but the percentage gain for females is greater than males making the ratio closer to 3/1in the UK, this has been confirmed by the University College of London. My son is not someone to fear. People are willing to feel what they feel. Humbly, the opinion of another parent of a child (now adult) with Autism. :). My life is not worthless. Yes, NTs and Autistics get together and have a blast! Autism Speaks has 4 pillars to their mission… Research, Advocacy, Awareness & Family Services. TikTok is a great way to see what products are trending. I will always Light it up Blue on Autism Awareness day because, regardless of what I feel about Autism Speaks, it brings awareness to the cause. I love the fact that this site is raising awareness and provoking discussion. Thank you for reading! It kills me to see her hurt herself because she cant interact with her parents, friends and peers. It’s crazy how easy it is that an organization so popular doesn’t really help the people it claims. Do you people realize that you are basically advocating for genocide? Amen! Because that is also autism! The organization was founded in April 2009 by Alison Tepper Singer, a former senior executive of Autism Speaks and a member of the Interagency Autism Coordinating Committee (IACC), and Karen Margulis London, co-founder of the National Alliance for Autism Research. You will not ever see me post a link to or like Autism Speaks! Suggesting that a community should be entirely ameliorated does not recognize the truly diverse social, communicative and behavioral circumstances within the community. It’s because they want to speak FOR our kids. What is that, anyway? In my view that kind of judgemental approach is essentially emotional abuse. It specializes in promoting autism therapies and applied behavior analysis techniques that are supported by scientific research and strongly condemns myths and treatmen… Wouldn’t it be better, however, if we could change society to not take advantage of him, or find further ways to support him to understand social complexities rather than taking away his autism which (potentially) is such a large part of his personality? Having worked in non-profits, the model the good ones use is where 20% goes to administration, and 80% to causes/goals, hence the importance of goal-setting, and strategic plans. They should know full well that a sizeable percentage of Autistic folks are not verbal and don’t “speak” . They are trying to make decisions regarding the future of autism without consulting any individuals with autism. I don’t need it. That is success. This show is unique in characters, storytelling methods, and plot. If it means being “plastic” (even without Botox) and believing you’re a superior being whose opinion matters more than those of the “minions”, well, thanks, but no thanks. Even if, like mine, they’re not, I still feel compelled to work harder to make them proud, even though I know they are proud of me already. Just speaking as one because I can’t speak for all, but those long term damages finally got me in my middle 30s to which I got the standard be strong aka I don’t truly want to hear this or care. Also yes. Another reason is that one of the two main pieces was unrelated to autism and had no connection to autism at the time and finally the data from the second piece was considered a symptom of autism and not the genetic factor. There is a huge range here. Children are born with cleft lips all the time, and we know what to do to correct that. Heard that enough before bleh . Love…. Thanks! I propose some better things than the status quo. Statistically, Autism knows no boundaries, families of children with autism have an 85% divorce rate and it IS scary. What Is Autism? Think before you donate. Yes! I get what they are saying but still. I also disagree with some. Best of luck to you and your son. Thank you for pointing out these little known facts. Nonprofit Organization. I know she’s her child so I can’t say anything but she’s self centred and thinks only how hard it is on her not her daughter. – I have no hesitation in saying yes. That might give you a start. My partner was diagnosed with autism only recently while I was pregnant with our son, who is now 15 months. So glad that you stopped by! I simply can’t support an organization that pays their CEO such an obnoxious amount while they ignore the real needs of the families the organization claims to support. Microsoft is an example of doing something, but they seem more keen on hiring savant types as others on the spectrum have had terrible luck with them. So thank you for stating your experience so I may know. Because I shouldn’t have to justify my existence, and I shouldn’t have to plough through bigoted comments from people who can’t empathise with autistic people, and think they are better off changed or gone. This means those who are the most supportive of the organization are those who are not educated about the issues, which is quite disturbing, especially considering that Autism Speaks claims to increase education about autism. We need to be prepared with a list of things to have with us whenever we leave the house again. Thank you so much for your comment. But let’s at least offer it. This is by far the most important item on the list. Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism … The organization … There is nothing wrong with searching for a cure or a way to pre-natally Identify autism. Identity Language, Why Everyone is Autistic These Days - This Outnumbered Mama, To the Mom Who Just Received Her Child's Autism Diagnosis, Self-Advocacy Explained: The Practical Guide to Autism for Parents - This Outnumbered Mama, 5 Crazy Secrets That They Don't Tell You About Autism - Autistic Mama, How to Write Autistic Characters Pt. A person does not have deafness; a person is deaf. It’s the abuser and bullies’s fault. Required fields are marked *. They have a very strong vestment in this organization. Apologize for my sloppy or maybe weird way of writing, but it’s the best way I can communicate. Dana Susan Beasley recently posted…Autism Awareness Day– Celebrate Autism ACCEPTANCE instead! Woohoo! Not research for improving therapies and equipment that helps individuals with autism, but research for a “cure” for autism. But now people are taking advantage of his naive nature and borrowing money off him (never to repay it), calling him a retard, and basically treating him differently which is so, so unfair. :), Your email address will not be published. In contrast to Ms. Singer’s views, Autism Speaks would like to see more research into possible links. Only 4% of their huge budget goes towards actually helping individuals with autism and their families with their family grants. Yona Williams recently posted…Novica Sells Unique Artisan Crafts from 8 Different Regions. Is not autism’s fault that your childrens are abused or bullied. Thank you for sharing this information. But if you decide to terminate based on fear and a test before they’re born, you;ll never know. I’m a huge supporter of the Autism Society of Minnesota and all affiliates – we are the exact opposite of Speaks- boots on the ground supporting individuals and families every day. Please do not take this as any form of criticism or disagreement – we all have our own opinions. I could go on and on but if you’re not convinced by now there’s no point. But being different is what makes this world a better place. I’ve seen the worst of the worst…I’ve seen parents who have to lock themselves in a room bc their 27 year old non verbal son may beat them silly. Do you even know what that would mean if autism speaks had even created a pre-natal test. Eventually, that research lead me to realize I’m autistic myself. Took a death under his care to even change things which breaks me mentally because that little girl should still be with us but nobody listened to either my parents or me. THANK YOU!! I honestly cannot agree with you on that. I don’t think that anyone who is neurotypical will ever fully understand autism. Not only did my partner go through an entire loop of essentially saying if our son was going to have autism, he would think it’d be better for him not to be born (he was emotional, and he was dealing with the emotions of his own diagnosis)..but he also talked about the extreme guilt he’d feel, as he wouldn’t wish his experience on anyone. They don’t advertise $$ for families. The MSSNG portal enables qualified scientists to access, study and share findings on detailed genomic information from people with autism … This is the environmental component of autism. They must have taken lessons from the Alzheimer’s Association. And frankly, as an autistic person, I can’t believe an organization that claims to represent me honestly wishes I were never born. If even your parents don’t want you the way you are, who will? A cure can mean a lot of things to a lot of people. We are the realest most interesting group of people. Isn’t it so sad that all of this can happen and a huge majority of people don’t know? It’s very interesting. While it’s a teeny, tiny, baby step in the right direction, it doesn’t rectify the damage this organization is done. Songs About Being 17Grey's Anatomy QuotesVine Quotes4 Leaf CloverSelf Respect, 1. The rest of my family supports Autism Speaks, but I don’t. I think it would definitely be good if there was a cure or at least a way to help people in a big way with severe autism but your comment makes it all about the parents/teachers. Inside of keeping them inside sometimes it helps to talk about it. Bell curve calculations indicate that about 6% of males and 1.5% of females are predisposed or 4/1. <3 I 100% support all autistics, regardless of their abilities or struggles. I would’ve had no idea. Unfair/dishonest distribution of funds caused a scandal in United Way in the 80s. https://www.theguardian.com/music/2019/dec/13/harry-styles-fine-line-review-columbia, https://www.nbcnews.com/think/opinion/amazon-s-wilds-much-more-just-gender-swapped-lord-flies-ncna1250078, 27 Things To Carry In Your Purse, Because If 2020 Taught Us Anything, It's You Just Never Know, 34 Harry Styles Lyrics As Instagram Captions That'll Even Make Him 'Adore You', 20 Songs For That Breakup Playlist You'll Listen To While Binging Ice Cream, 10 Memories From The Early 2000s Because Life Was Easier Then, 11 Christmas Movies You'll Remember If You Were A 2000s Kid, 9 Reasons 'The Wilds' Should Be Your Next Binge Watch, 5 Therapeutic Ways To Be Adventurous During The Pandemic, 10 Things TikTok Made Me Buy, And Now My Life Is So Much Better. Thank you so much for the information about autism speaks…I stopped supporting them five or six years ago…when my twin boys were diagnosed with Autism at the age of two…I had my days of sadness…and then I prayed and ask the lord to show me what I can do to improve and help to make their lives a little bit easier…And then that’s when…A Cape grew out my back. She took me to another doctor! Autism Speaks is a research organization, they have never denied this fact. I see nothing wrong with that when the intentions are pure and clear. I dont’ agree with everything but I do think that we must be very careful what we support. And don’t make them feel like they’re somehow letting you down by being the person that they are. Note I’m not insulting anybody, so hope no offense has been taken. The organization uses science to address the social, educational, and treatment concerns of self-advocates, parents, autism … While you may not want one, that doesn’t mean others wouldn’t. Autism is not a disease, or disability, it is an advantage of the next evolution phase of humanity. So frustrating. Are you. I must share this. If you don't keep these 27 items In your purse, what's in there? Please don’t for the sake of these kids and again I thank the writer for supporting ASD in a truly kind way. Autism Speaks is an autism advocacy organization in the United States that sponsors autism research and conducts awareness and outreach activities. The fast VRT allowed for large brain wave distortions and is the reason they are autistic. Autism Speaks is one of few disability charities that refuses to include individuals with disabilities on their board or in leadership positions. I’ve fought for my rights and I’ve won every time. Oh I can’t believe this. So I made a list of lyrics from each of his songs that you could use in your next Instagram caption. why on earth would anyone have kids these days when so much can be wrong with them? Without my connection to Aza, Ash, Luka. I was very impressed when I toured the facility. Is autism a disability? Their scare tactics help keep families grateful for their services and encourage them to continue to use their services. I enjoyed reading your post and seeing all of the reasons why you write. So this is something integral to the biology of your family. Autism Speaks is not an organization for Autistic People it is an Anti-Autism hate group in its own regard. Music Speaks Autism. Key is…. Oh I couldn’t agree more. Do they want to invest in it or actually make logical adaptations as a means to open up long term returns, or keep it as is and continue to gobble up power in a small amount of hands until forced under a law I would like to call The Decency Act. It’s not something that’s easy or clear for anyone, so I feel it’s a discussion that should be open without shame. I am autistic myself and I absolutely hate that video, I’m still scared of it. I bet so many with ASD would benefit from a change in the mode of production and even Nerotypicals will too, so this is a win win for many. They understand every single nuance of emotion and feeling in the people around them. Once they are done with the lessons California requires 60 additional behind the wheel by the parent which is what I am doing now. An infant that inherits a fast VRT is predisposed to becoming autistic. An increased exposure to fluorescent light, an increase in autism, NICUs and day cares or just the need for more illumination, short winter days resulting in a seasonal variation or the abnormal amount of overcast days of the Pacific NW causing an increase in autism. Even if we are not traveling abroad at the moment, we can still travel locally while maintaining social distancing and preventative guidelines. If there was a test to inform me that my son was autistic, I know I would have been better prepared for it and not take some of his actions as being stubborn or just plain out ignoring me. We all have moments where we feel down, frustrated or at our wits end. Hi, I’m really interested in your article. My son with an autism diagnosis is NON VERBAL. I’ve worked with individuals who are 26 years old and can not live with their families because they are so prone to violence, they smear feces on the wall and masturbate in public, there is nothing wrong with parents of those individuals wanting a cure or considering their child’s situation to be a disorder. I apologize for my misspelling of the word….Autism…with twins on the brain…its sometimes hard to retain. This is what’s causing the regression, not the vaccine. So, you want to ignore all the low functioning children who are struggling daily, and their families are struggling? 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