This is the environmental component of autism. For those who say that its simply that there arent autistic people interested and qualified, the Autistic Self Advocacy Networks board includes several autistic self-advocates. Support is the way because the only people who are the real people to help are the people who care not autism speaks but real people such as professionals or family. I always check the amounts used for the actual purpose of any charity. So thank you for stating your experience so I may know. Autism Speaks is responsible for hateful "awareness" campaigns that demonize autistic people. They would commit genocide if given the chance. And Autism Speaks' track record on inclusion of the very people it claims to represent was limited, at best, and now has returned to nonexistent. How will people with autism assume a leadership role in guiding the development of tools and therapies to help our community? People are willing to feel what they feel. Is autism a disability? But the attempt to appropriate the aesthetics of neurodiversity without changing conduct or content comes off as oblivious and craven. I love my kids with my whole being and would die willingly if it could help them but I cannot wish this for anyone. Thank you so much for your comment. As recently as 2010, they were still calling for additional resource into a possible link between autism and vaccines, despite the fact that the study suggesting a link to begin with had been universally discredited because it was based on fraudulent data. It is high time we took mental or personality conditions seriously. Global Autism Project: The Brooklyn based organization centers on training autism service providers and educators around the world with culturally relevant, sustainable practices. And I can 100% say that HE wishes there was some kind of pill he could take that would eliminate some of his societal struggles. 5 Shocking Reasons NOT to Light it Up Blue for Autism Acceptance Day, 5 Things to Do Instead of Light It Up Blue on April 2nd, Autism Speaks Partners With Abusive Therapy Center, Autism Therapy Red-Flags All Parents Should Watch For, Super Fun Hearts and Flowers I-Spy Free Printable for Kids, Autism-Friendly Reading Curriculum | A Hands-On Reading Curriculum for Your Homeschool, Say No to Things You Need to Know Before Kindergarten, Preschool Aggression: Prepare, Plan and Repair, Imaginative Play: Setting up a Dinosaur Small World, How to be a Mediocre Blogger in 10 Easy Steps, Novica Sells Unique Artisan Crafts from 8 Different Regions, Autism Acceptance Month - This Outnumbered Mama, Autistic People in History - This Outnumbered Mama, Please Do Not "Light It Up Blue" For My Son - This Outnumbered Mama, Autism Organizations - This Outnumbered Mama, Autism: You Can Do This - This Outnumbered Mama, Disabled Self Advocates - This Outnumbered Mama, My Thoughts on Person First vs. This organization has a lot to answer too and may very well refuse to answer to it because those people on that board think they are doing a service, and believe in their cause. The organization's video resources seem to focus only on those that seem the "most autistic", displaying children using computers to communicate and children who are nonverbal. Is it possible to send me this is text format as I would like to share with the autism advocacy group in my company. Thanks! Its parents and professionals that prefer person-first. Thank you ASD mom for your contribution to ASD and being somebody who cares. Im glad they didnt have a prenatal test for autism back then! There is nothing wrong with searching for a cure or a way to pre-natally Identify autism. They also made a movie called Autism Every Day where mothers talk about how difficult their lives are because of their children with autism with their children in the room. Yes, there are challenges and we work on them constantly. Please dont for the sake of these kids and again I thank the writer for supporting ASD in a truly kind way. I do not support research towards the goal of killing autistic babies. Forgive me if I am not good in being full of shit in interviews. I have been told lots of times that I wont achieve anything or be able to do the things I want to do, but I have done every single one of them. Thats like saying you wouldnt cure blindness or any other disability because thats how they are and you wouldnt change a thing about them!! Autism didnt speak in my mum or dads house for years. Ive made that point in the past; apparently to no avail. But being accepted for who one is in one space at least is helpful. Of course. If you are looking for autism organizations to support, please check out the Autistic Self-Advocacy Network. My brother is non verbal and the name has bugged me for many years every time I hear it since the day they formed as all I have ever wanted for my brother was for him to be able to speak. When we found out that A-Man is autistic, I went into research mode, like I do with everything. 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. He is totally trapped in phobias, anxiety, and other issues I wont go into. What are there hearts!? But before that happened Instead of blaming the victim? As long as I have been supporting this organization, I have never once heard anyone or seen any research that is designed to eliminate people with autism. It pretty much implies that Autistic children are terrifying little demons out to deliberately destroy their families and that they need to be gotten rid of. Autism Speaks is a research organization, they have never denied this fact. But that little fact and any number of others didn't get in the way of Suzanne Wright when she settled in to pen her organization's recent "call to action" on autism, this time switching pronouns to assert repeatedly in boldface, "This is autism." It's not the first time someone has compared autism to having a child stolen from them or to a dire disease. moment-to-moment. I wouldnt trade my daughter for anything in the world and I wont allow her to be treated as less than just because of autism. Their fragile still developing brain is receiving very distorted information when exposed to fluorescent flicker causing improper neural connections and pathways leading to autism. There are 350,000 Amish, some vaccinated and others not, no electricity, no autism. Opinions expressed by Forbes Contributors are their own. Im not blind to the extremes of the condition, although I do think that parental approach has an impact. Person first language shows respect for the individual youre speaking about- letting the person be a person and not immediately identified by their diagnosis. You can watch here. I took as a way to diagnosed early so we can better understand and start treatment soon as possible. Amen! I am autistic and Autism speaks is a hate group that wants autistic people to not exist. Are they perfect? To flip that on its head, the autistic person is waiting for you to communicate in a way THEY understand. So, would I change that with a pill? But if you decide to terminate based on fear and a test before theyre born, you;ll never know. Note Im not insulting anybody, so hope no offense has been taken. People with autism have obsessive tics that need to be stopped (mostly wrong). Without my connection to Aza, Ash, Luka. It would mean every new mother and father except maybe for a few (such as parents with autism) would start aborting offspring because they though their autism is bad. But at least SFARI is getting it right on the science and doing it without roundly offending autistic people in the process. It was founded in February 2005 by Bob Wright and his wife Suzanne, a year after their grandson Christian was diagnosed with autism. And if someone was to knock on my door one day and inform me they had made a deal with God, Allah, Buddha, Jehovah, the devil- any higher power, that would mean my autism could be taken away just like that, ensuring me the chance of a so-called normal life, I would tell them in no uncertain terms to take a hike. Theyre the most popular autism organization, but theyre so harmful.). A cure for a person who cannot leave their home because of their sensory issues, is the ability to settle those sensory issues and leave their home. I dont see the problem with trying to find a test for autism before birth. Finally, after more than 70 years of worldwide research the two main pieces of the puzzle can be put together and then all the other pieces fall into place. I myself want my son to find his own voice. takes on an entirely different dynamic that our federal government would love to interfere with. Autism Speaks still has a base of support among families of young children, but it has very little support from parents of older kids, or autistic adults. Thanks for posting this blog. I have a autistic brother I like the way he is and I dont want it to change. Maybe they dont have the money to pay a special lawyer to fight for school services. Were not in the 1800s or 1900s and no way should we reverse course or be all left behind. :P thats their life and your life over. The medicine prescribed to me has done nothing but make my life better. Real change must be in the form of laws and structured alternative ways to provide opportunities that otherwise wont exist. I guess its something, but there must be better ways because we like everybody else want to be helpful and contribute as well but minus all the abuse or targeting which I experienced at work nearly every single week. Some are nonverbal, some have poor motor functions, etc. Without my Vocaloid obsession. I had no idea until we found out A-Man has autism and I started researching. I thought it ment that the organization speaks for the concerns and supports person with Autism.I didnt take it to mean Autistic people dont speak. Unfair/dishonest distribution of funds caused a scandal in United Way in the 80s. We agree on many points. Oh my goodness, I didnt know! etc. You might have a kid wholl one day be an artistic genius or a top computer programmer or who might discover the secret of life. I am not sure where you live but there are driving schools in my area (San Diego California) that give eight hours behind the wheel. I have done the Light it Up Blue thing every year without knowing what was going on behind the scenes with Autism Speaks. So this is something integral to the biology of your family. Praying you find something that works well soon! If they ALSO show what other people experience, that is also OK. That is also the truth. This understandably drives the anti-vaxx movement. For a comparison, 22% of their budget is spent on fundraising efforts. Im doing my English summative on misrepresentation of neurodiverse people as well as on ASD and ADHD with my sister. How will it survive if it doesnt listen and change course? The words are in their heads and with a device he can demonstrate that to you. If AS shows what some people experience, that is OK. Thats the truth. We cant speak for everyone but at least if were listened to a little bit, maybe more understanding can begin to grow. I tried to go back and find out where the money went to that was donated from all my friends on Facebook for my birthday but theres no follow-up button to go find what was contributed. Im not in the US but have heard plenty about this organisation and worse things that go on with the treatment of autistic people. Just seems rotten and inhumane IMO. We do not, however, need to research ways to end autism. If we havent met yet, hey friend, Im Kaylene! As for the name I took it for the people(me in my son case) speaks for them. Its so frustrating because he really is quite smart in his own way, but speech has been elusive. By which I dont mean were all wild animals, but the native instict of fight and flight are much more powerful and it takes a lot longer for us to feel safe or secure. I realize that many people have only heard of Autism Speaks. I simply cant 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. As long as you can live with your choice, thats fine by me. Without even apologizing for the damage its done. So a cure for a person who cannot speak because of their autism, may be the ability to speak. You and people like you and my son are the reason that I write these posts. I know for sure I can live with mine: stay away from doctors who prescribe antipsychotics. 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. Id love your thoughts, as I feel his beliefs are aligned to yours that meds would improve his life without changing HIM. Autism Speaks doesnt hide what they do. I felt as you did when my two kids on the spectrum were young. Good post. It reminded me of a horror movie from the 1960s. For years my parents bought all the books and met with all the doctors. If a cure can be found, it is up to the patient whether they wish to accept it. I dont agree with everything but I do think that we must be very careful what we support. And allow him to speak. In other words, Autism Speaks cares more about making money than about helping autistic people. Its not fair to these families to dismiss the idea of prevention or a cure. Just making a point and opinion as its due time. Autism Speaks is one of the largest autism organization, yet they are not focusing on autism affected people and their families. Do we need better supports in school, better infrastructure for our children as they grow? This is whats causing the regression, not the vaccine. At first glance the answer seems improbable but after 70 years of research it was obvious that the answer wouldnt be obvious. Bit more complicated, but you can see the proof if interested as the history about it is clear as filtered water. Except that, almost in the same breath, evidently we are living. It would be hilarious if they werent actually getting rich off of peoples gullibility and ignorance. Dont assume what;s best for them, just because its what YOU did or what YOU want. Remember all those parents who support and work for and run the organization none of them want their child eliminated. Acceptance being one, sometimes other things have been needed for me, but the biggest hurdle is the entire education and working environment is based on Nerotypicals, factory type model which leaves us without much realistic choices. Good luck to all and thank you for being a caring ASD mother. People with autism can't learn without intense behaviour modification techniques similar to what you would use on a dog ( SO VERY WRONG ). They dont advertise $$ for families. And why? Its that good! I like the research but I dont take it as if autistic never existed. You can read more about that here. There is a huge range here. The problem is that Autism Speaks has actively contributed to the hostility that autistic people face. In 2009, Autism Speaks released an ad titled I Am Autism that portrayed autism as a silent and sinister killer. Many activists say it's ironic that the organization name Autism Speaks does not voice the concerns of people who themselves have autism. We have laws in place today because of this organization. She claims that the country has failed autism families, "let them split up." I was supposed to join the group. But lets at least offer it. They describe autistic people as burdens, and autistic lives as tragedies. The medicine prescribed to me was one of the best things I have been given by the people supporting me. Our support and activities include: Autism Response Team: a group of trained team members who provide information, referrals, and access to resources. Heard that enough before bleh . Critics say the organization is staffed by and geared toward primarily parents who want to "fix" their children rather than people living with autism themselves, or families who want to better understand how to communicate with, accept and advocate for their autistic loved ones. My friends said they needed a receipt to claim it from their taxes that was never issued. Yet in spite of their ostensible role as a voice for autism, they've got a poor track record of showing respect for autistic people. One place that I find consistently good interpretation and synthesis of autism science is SFARI.org, website for the Simons Foundation Autism Research Initiative. It hurts me to have to feel that way, because its the ignorance that makes it happen. But the confident and peace of mind the driving school gave was essential to getting started. I could go on and on but if youre not convinced by now theres no point. On a side note Google ads gave me a ABA ad uggggh. I was lucky to have that kind of help and I will admit there are struggles but there are struggles with anything in life even in mine but as someone with autism its part who I am and probably who any of my future children will be so no I wouldnt change anything about myself. I love my 14 year old son dearly, but in a second I would give him that pill and happily change a huge part of him. The changes in rhetoric are meant to show that it is responding to shifts in societys understanding of autism. Shecki @ Greatly Blessed recently postedGlitter Valentine Shirts. Hope this never happens to another child or as they reach adulthood they too can end up like me. I lied and agreed to make it stop and they got credit for being helpful, but it destroyed me long term so Im at a rebuilding stage unfortunately. That is a lie. Needs to stop ASAP and a new model of acceptance is brilliant. Thanks for sharing your perspective! The problem is the majority get fooled by this organization, the public needs to know what they are actually about, self serving and not doing the community any real service. And Im sure a lot of people I know have no idea either. I realize the authors experience is different. Billionaires like to hoard up the cash and power so were unfortunately stuck at this point as some lack empathy yet the myth is us with ASD do. Maybe their child has been trying to bite them or themselves. Sara @ Embracing Destiny recently postedHow to be a Mediocre Blogger in 10 Easy Steps. Thank you for the information. And allow him to interact with his peersand yes he would be different but I am certain that he would prefer that life if given the choice. Again, I respect this womans right to choose the organization she supports, but I cannot discount all the good that Autism Speaks has done. Ive fought for my rights and Ive won every time. My partner has been considering meds for these that would increase energy and focus but has been scared to take the leap. It hurt me emotionally since I dont want to be feared by people. They are trying to make decisions regarding the future of autism without consulting any individuals with autism. For readers who still wish to see this video, here is another link to the video: https://www.youtube.com/watch?v=9UgLnWJFGHQ. Dozens of major corporations, including SAP, Goldman Sachs and Ernst & Young, have launched Autism at Work initiatives, to promote employment of autistic people in the technology sector. If it means being plastic (even without Botox) and believing youre a superior being whose opinion matters more than those of the minions, well, thanks, but no thanks. In 1998 a study using EEG technology was conducted to determine the impact of fluorescent flicker (strobe) on humans. In the past, they've listened to feedback from the autism community and made positive changes. But otherwise its a pointless goose-chase and they really should instead finance life-enhancing things and education. predated Autism Speaks, but none have had its massive budget and wide reach. I would never take that away, and I would never, ever, wish that he hadnt been born because of his autism. Autism Speaks has consistently stood against autistic empowerment and self-advocacy on Capitol Hill. The more people who wake up to that vile organization the better and youre helping. Here are a few: Autism Self-Advocacy Network (ASAN): ASAN is run by and for autistic people with the goal ofensuring equal access, rights, and opportunities for the autism community. I too agree with your sentiment and have never been impressed with the major Autism funds..but I am for research. Autism Speaks has had and will continue to have (as the opportunity presents itself) board members and/or other representative of the organization with autism. 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. Thank you for this information I will be sure next year for my birthday to not allow all my gifts to be contributed to this. It causes struggles, but if it werent for being autistic, I wouldnt have some of my best friends, in real life, online, and imaginary. I prefer to be referred to as autistic, because saying I have autism carries unpleasant connotations to me. Ive 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 childs situation to be a disorder. They knew of my issues so I thought hmmmm seems odd and of course I was lied to and told its standard protocol blah blah blah. What is that, anyway? <3. 4. Love. Autism and ADHD were among the most Googled mental health terms in 2021, eclipsed only by searches about anxiety and depression. Thats exactly why I decided to write this post. My choice. Nicole Schwarz recently postedPreschool Aggression: Prepare, Plan and Repair. Its the abuser and bulliess fault. This is the genetic component of autism that researchers have been looking for. I enjoyed reading your post and seeing all of the reasons why you write. 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. There are pills to help ease the symptoms of ADHD, Bipolar, Depression and any number of neurological differences. Totally false and gross oversimplification. Autism Speaks supports individuals and families in communities throughout North America and the impact that we have at the community level is a core part of our mission. I couldnt believe it when I saw it! All of these things, we know. They're the most popular autism organization, but they're so harmful.) Yes, a much smaller percentage goes to family services, but if you think about it Family Services doesnt need as much as research. If we cure all autism or kill autistic babies (which really is a goal of autism speaks), how many Mozarts and Einsteins would we as a society lose out on? I noticed some outraged commentators on your post hotly defending the idea of a cure or of the work done by this organisation. Frankly as a brother to a non verbal Autistic, and one of an age when there was little to zero community knowledge or support for Autism (you say hes ARTISTIC?) I find the name of the organization offensive. But Autism Speaks does not acknowledge the connection in any of the materials it has released promoting its new, more inclusive look. Autism Speaks goals have seemed to change little. I am happy to have come upon this information. 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. I resent being told through media channels and from idiot parents that my life is either worthless or will never amount to anything. I looked it up on youtube then and watched the video and I was shaking after I saw the first half. I have seen decades of burden and guilt my mother carries and it is haunting, and in part due to many public finger pointings at mothers over the years. Yona Williams recently postedNovica Sells Unique Artisan Crafts from 8 Different Regions. Never saw anybody else being singled out and humiliated at work in front of other coworkers, but heres ASD man so have at it is what it seemed like. Though the organization has never advocated for parents to withhold immunizations, many believe Autism Speaks' years-long demand for more studies on a possible link contributed to a growing number of parents leaving their children at risk of contracting or spreading nearly eradicated diseases like measles and whooping cough. Parents and grandparents are often frightened by autism because they fear the worst for their . Think about it, if AS represented autism in a positive light all the time, how much funding would people give to something that is so wonderful. I also disagree with some. I feel lucky to have come to this post via Facebook (not always the case with FB! Kaylene I have a son that has Aspergers syndrome, hes 20 yrs old has worked at McDonalds for 2 yrs now hes finally interested in getting his license to drive hes always been too nervous, I want him to take the driver education course first, do you have any suggestions on a place thats good teaching it to an Aspergers individual. Humbly, the opinion of another parent of a child (now adult) with Autism. Kudos for the original blog post for highlighting problems. So frustrating.