Autism

7 Reasons Why I Support Autism Speaks as an autistic adult

support autism speaks autistic mom blog

I’m autistic and I work for Autism Speaks as their Director–Social Media and Social Influencer Marketing. I work there because I support them, and have for a few years now. The opinions I’m sharing here are solely my own, as one autistic person. I don’t speak for Autism Speaks or the autism community. No one alone speaks for the autism community. 

Anyone who has read my book knows that until a few years ago I was neutral about Autism Speaks. Why? Because I didn’t have enough information. I had incorrect information, too. I’m not the type of person who reads an opinion online and takes it at face value. I formed my opinion based on my own research and what I discovered to be facts. 

Now that I’ve worked for Autism Speaks for a while, I can confidently say that what I discovered was correct, and I do support Autism Speaks and its mission.

Is Autism Speaks a hate group?

Every single time I mention Autism Speaks in one of my posts, someone comments that I need to do my research because Autism Speaks is a hate group. 

It’s people’s right to not support Autism Speaks, of course. If that’s the case with you, say “I do not support Autism Speaks,” not “Autism Speaks is a hate group.” I encourage you to do research to challenge your belief. See what you find. Spreading misinformation about an organization you don’t support has real-life effects.

7 Reasons Why I Support Autism Speaks

1. They listen to autistic people

Not only do they want people on the autism spectrum to reach their full potential as individuals, but they listen and give a voice to autistic people.

In the past, they’ve listened to feedback from the autism community and made positive changes. 

One of the things that keeps being said about Autism Speaks is that they don’t hire autistic people and don’t have autistic people on their board. Both accusations are false. How do I know? I’m autistic and I work at Autism Speaks and I’m far from their only autistic employee. People aren’t obligated to disclose their diagnosis and honestly, I don’t blame those who don’t, when I see the bullying of anyone who supports Autism Speaks. 

On their board, there’s Dr. Stephen Shore, who is openly autistic. For those who don’t know, he’s the guy who originally said, “if you know one autistic person, then you know one autistic person.”

Autism Speaks also has a podcast called Adulting On The Spectrum, produced and hosted by two autistic adults, me and Andrew Komarow. We have only autistic adults as guests — even those who don’t support Autism Speaks.

2. They don’t support eugenics 

No idea where the rumor that Autism Speaks supports eugenics came from, but it’s completely false. “Autism Speaks does not support eugenics. Our research in the genomics field (via AGRE, MSSNG, and PATH) exists to help advance the field so that ultimately autistic people have access to personalized, precision care that will empower them to lead their best lives.”

Source

3. They use the puzzle piece symbol

Just like many autistic adults, and loved ones of people with autism, I like the puzzle piece symbol. Contrary to what’s said on social media, Autism Speaks doesn’t use the puzzle piece symbol because they want to represent that people with autism are missing a piece. They use it because they believe that their updated, more colorful puzzle piece, represents inclusivity and optimism as they look toward a future of progress for those on the autism spectrum. It has never been about autistic people “missing a piece”. Let’s stop that rumor, okay?

Source

4. They’re not looking for a cure

“Cure” was removed from its mission statement in 2016. The thing is, even if they were looking for a cure, it still wouldn’t be a reason to call them a hate group. Many autistic people are in favor of research into a cure. Many are offended by the idea. We don’t even know what a “cure” would look like. What if we could target a specific struggle that affects many autistic people, while keeping the more personal or preferred traits? 

Some of us struggle more than others and don’t see our autism as just a personality difference. It should be a personal choice. Back to the point though, Autism Speaks is NOT trying to cure autism.

Source

5. They do a lot for the autism community

Recently, they helped get Medicaid to cover autism for children in all 50 states, Texas being the last. They also helped develop the WHO Caregiver Skills Training Program. Here are some other goals they have: 

  • Increasing early childhood screening and timely intervention with our bilingual public service campaigns aims to lower the age of diagnosis to help children with autism reach their fullest potential and offer resources to help caregivers better support their children with autism. I personally was able to get an early diagnosis for Charlie (22 months old), thanks to the M-Chat, the results of the test are what got the ball rolling. He scored so high that doctors took us seriously right away.
  • Improving the transition to adulthood for the 70,000+ autistic Americans who age out of school-based support each year by offering free online resources for transition, employment, education, housing, and community living. We also launched our new inclusive employment initiative (WIN) to build and support inclusive workplaces through a comprehensive suite of resources. 
  • Ensuring access to reliable information and services throughout the life span by continuing to expand our Autism Response Team’s reach, technical skills, and knowledge to provide more people– particularly in underserved areas and communities – access to resources, information, and support from time of diagnosis through adult life.
  • Their autism hotline is amazing

Their hotline is The Autism Response Team. For everyone looking for help, The Autism Response Team (ART) is an information line for the autism community.  Autism Speaks Team members are specially trained to provide personalized information and resources to people with autism and their families. 

You’ll get personalized advice based on what your situation and needs are. It’s free, of course.

Get in touch with their Autism Response Team here.

6. Their website is a mine of autism resources

It’s not the easiest website to navigate but when you know where to look, you’ll be amazed at the resources available for free.

I often get asked about how to teach children AAC. That’s a complicated question and task but their guide is a great starting point:

  • If you suspect your child has autism, take the M-CHAT here.
  • Haircuts? Autism Swim lessons? Autism evaluations. You’ll find your answers here.

7. They include everyone on the spectrum

Everyone on the spectrum is included at Autism Speaks, people with low support needs, people with higher support needs, and everyone in between. They also provide support to caregivers of autistic people. As someone with level 1 autism, raising a child with level 3 autism, I find this representation very important. Just take a look at the diversity of profiles and stories shared on the Autism Speaks Instagram page. No one is left out and that’s amazing!

support autism speaks autistic mom blog

The Autism Speaks controversy

So where does the controversy come from? Some of it comes from mistakes made a decade ago that have since been fixed and some of it comes from the constant propaganda being spread on social media.

The main mistake was the “I am Autism” video, which depicted autism in a rather uncomfortable way with some questionable wording. Not only is that video TWELVE years old, but Autism Speaks has also apologized for it and it was taken down from their website within a few days of being posted. This video does not represent Autism Speaks. Here’s their statement about it:

“I Am Autism” was a mistake and the video was removed from our channels shortly after it was posted, in 2009. We apologize for the video and the harm it may have caused. Since 2009 we have not shared or distributed the video. We are aware that the video is still being posted and shared today by others as an example of our current campaigns and messaging – which it is not.

We are focused on supporting autistic people of all levels of need so that ultimately, they can lead their most meaningful lives – of their choosing. Our public service campaigns and marketing efforts reflect this focus on personal growth and inclusivity.”

I’d like to add that non-profit organizations are required to report their expenses publicly so if you see that fake pie chart being circulated, again don’t take it as face value. I implore you to go Autism Speaks website to look at public numbers and facts.

Give organizations the chance to evolve

Bottom line. Companies evolve. I think it’s amazing that Autism Speaks listened to the autistic community, took the feedback, and made meaningful changes. We can’t expect perfection but we can request to be listened to, and on that front Autism Speaks delivered.

I’m autistic and I support Autism Speaks, and I hope you give them a chance.

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62 Comments

  • Reply
    LorrieAnne
    2022-06-14 at 4:27 AM

    My life has been hell. I just learned that I am autistic in 2020 at the age of 57. Now my life is more hell!!!!

    • Reply
      Helen
      2022-08-05 at 10:05 PM

      Why is it more hell after learning you’re autistic?

  • Reply
    mars
    2022-07-18 at 1:05 AM

    wow this is like bad like real bad did you get paid to write this by autism speaks bad still only 1 autistic person of 28 individuals on its Board of Directors from what i know and they are still funding cures do better.

    • Reply
      Eileen
      2022-07-21 at 6:23 PM

      They are not. No one is forcing you yo support them but don’t spead msinformation.

      Source: https://www.autismspeaks.org/autism-speaks-questions-answers-facts

      • Reply
        Alexa Votruba
        2023-07-20 at 3:31 AM

        I LOVE this article! I cringe back at my “anti-Autism Speaks/ABA” phase. Not to mention,Autism Speaks is the ONLY website where I’ve found guides for everything.

      • Reply
        Maggie
        2024-02-16 at 8:26 PM

        You do relaize that linking back to Autism Speaks for your defense of the company is extremely sketchy right? It’s blantent bias and did you know that soemtimes companies lie? They have proven their goal from the very start, and that’s to vilanize autistic people; which has obviously made bullying throughout my and other auties’ lives even worse. It’s like saying that PETA doesn’t kipnap and euthanize animals or euthanize over 80 of their animals, and then linking back to PETA as a source because “they said so”. There’s a reason why people can lie. Because their reputation and money is at stake.

        They make said lies because their evil practices is how they make their money. The entire article itself comes from someone from Autism Speaks which could be a bias source and could’ve easily been paid.

  • Reply
    Helen
    2022-08-05 at 10:11 PM

    I don’t understand why people are offended over talk of a cure?
    The high functioning autistics are rejected by society and the low functioning autistics need daily support.
    I am undiagnosed but I can say with certainty that I’m on the spectrum. I’m considering socialization training for myself and possibly for my daughter. It gets tiring living on the fringe of society.

    • Reply
      Noah
      2022-09-26 at 5:42 PM

      You shouldn’t be living on the fringes of society, though. Therein lies the problem. What the good autism advocacy groups are doing, are fighting FOR autism’s acceptance in society, not AGAINST it like Autism Speaks is. Socialization training is good, and it worked for me, but I was taught to embrace my autism instead of suppressing it.
      If you have autism, you shouldn’t be living with the thought that there’s something wrong with you. Like you need to be “fixed.” It is the public view of autism that needs fixing.

      • Reply
        Erick
        2023-02-07 at 10:47 AM

        You can be fighting for autism acceptance and still support a “cure”. Many people are capable of embracing their autism in a healthy way and that’s great – but many people will never be able to do that. And not just because society won’t accept them, but because for many people it is a disability that takes away their ability to function enough to reach that level of growth and fulfillment. Many people will never be able to speak, communicate, regulate their emotions, or have the basic autonomy to even try to “embrace their autism”.
        So while many people don’t want or need a “fix”, the idea that searching for a “cure” is WRONG, is exclusive to the many that do have autism steal their ability to even attempt embracing who they are.

        • Reply
          Reluctantly Autistic
          2023-08-17 at 6:07 PM

          Thank you so much for this. I too want more autism acceptance but I also dearly want a cure for my condition. I’m high functioning but autism robs me of social connection with others (even autistic people) and limits my employment prospects. It is very selfish and dare I say immoral to say that we can’t search for a cure just because a few people wouldn’t want it. You have bodily autonomy so just don’t take it! However, do not leave people like me to suffer for your neurodiversity ideological nonsense.

      • Reply
        Carlos
        2023-04-05 at 10:54 PM

        As a Father of someone on the spectrum let me illuminate on what my position is on this. I say it every day to my wife, if there was a shot or a pill that could wipe away my sons autism I would have him take it without hesitation. My son is non verbal and has had every therapy available since his diagnosis at 2.5 he is now 8. He still needs constant protective supervision and will most likely live this way for the rest of his life. Can you or anyone here say with moral authority that I am wrong? My wife and I are his sole caretakers for the rest of OUR lives. He most likely will never know the joy of being married, or having children of his own. Driving a car with the wind in his hair listening to a song he loves on his own cognition. Yes he will always be loved and cared for with no questions asked or any hesitation. He is beautiful and I love him more than words can describe, but Autism is no blessing in disguise, it is not some cause for neuro diversity chants. It is real life, it is tough on all who love him, and I hate it with the passion of a 1000 sun’s. Not the people who have it, just Autism.

        • Reply
          Kelly
          2023-05-16 at 5:33 PM

          That is your personnal experience. Saying you hate autism because of that became ableism (discrimination toward autism). What is happening with your son is sad, and I will feel the same toward his autism if I was you, but hating autism for one person is really not OK. Every autism person is unique, and you will be surprise to know that some autism are way better as social skills than the majority of regular people. I am really sorry for your son, again, I understand the pain. But what you are saying is discriminating. Your life experience is not an excuse to put everyone in the same boat.

        • Reply
          Eva
          2023-07-13 at 7:21 AM

          Your description sounds more like severe intellectual disability than autism. Medical and Hollywood bigots decided to make autism synonymous with intellectual disability in the 1980s. Even so, the stereotyping and bigotry your throwing in is dangerous and can irk on violence from ableists. Sure enough, a number of autis, myself included, have learning disabilities; ADD/ADHD; APD; some communication problems; & other neurological issues. However, autism is very much an umbrella term and is not one single condition. No two cases are the same. Most autis think outside the box, and can be very revolutionary in their thinking; which is the mixed blessing that makes it hard for us to communicate our views to the neurotypical populations.

  • Reply
    amgil
    2022-08-13 at 3:45 AM

    as an autist, fuck off. whos paying you?

    • Reply
      Fuck You... That's Why!!!
      2022-10-04 at 6:50 PM

      Was going to ask the same thing. I don’t for a minute believe this person is autistic and if they are they are being paid by Autism $peaks so autism speaks as someone who they can point to and say “look this autistic person supports what we’re doing”..

      The idea that something that isn’t a disease and is completely genetic needs to be “cured “is fucking offensive and is a covert way of advocating for eugenics.

      When it comes down to it autistic folks just want the same thing as everyone else we want to be accepted for who we are and we don’t want people to pretend something that is part of our lives/personalities is some sort of disease that needs to be “cured” when many of us are extremely proud to be autistic and we wouldn’t want to be neurotypical if we had the choice.

      Not to mention autism speak pretty much only exists to let crappy parents feel like they’re in the right for wanting to abuse their autistic children because with the way Autism $peaks talks they genuinely make it sound like having a kid with autism is more devastating than losing your kid to cancer.

      This whole piece reeks of “look at all the money Autism $peaks gave me to dunk on my own people”

      And then you see the idiotic neurotypicals claiming that they don’t understand why suggesting something that isn’t a disease needing a curious offensive because they don’t realize that if it’s not a disease it doesn’t need to be cured and there’s nothing wrong with us it’s honestly fucking disgusting if you ask me.

      • Reply
        Jae
        2022-10-23 at 6:53 AM

        I’m in my late 20s. I was diagnosed with Aspergers as a child and have been living with it, ADHD, and a learning disability my whole life. There are positives and there are negatives, but if I could choose not to be on the spectrum, I think I would. It is exhausting and overwhelming. Every day. It is possible to say this without devolving into stinking self-hatred and self-pity, as hard as that may be to believe. Do I think people could do more to just take me as I am and accept me, and help accommodate me in some ways? Yes of course, and hell, I’m in school to be a nurse right now and I get extended testing time on all my exams, among other things, but that doesn’t mean I’m not gonna do work on my end to improve my social skills and figure out ways to accommodate for my sensory processing issues.

        And in regards to your comment that trying to find a cure is “eugenics”, people decide to get abortions or not have children all the time for any number of reasons related to their genetics (as is their choice), and there is no way I would sit and listen to some hysterical screed like what you’ve written trying to tell me and mine that choosing not to have a child or to abort, when there’s a very high chance our child could have autism or down syndrome or some other developmental disability, is eugenics and that it’s “wrong”. I know very little about Autism Speaks, I really just found this blog or whatever because I googled “are there any autistic people who support Autism Speaks” out of curiosity after watching that stupid “I Am Autism” video, but never forget that Autism is a diagnosis, not an identity, or at least it’s PART of an identity; not all of us who have it think the same and not all of us are obnoxious and cultlike about it (like you appear to be from your comment).

        One more thing, the fact that you say “idiotic neurotypicals” and “dunk on my own people” tells me something too, I think you treat having autism as some kind of badge, as an identity, as something that makes you feel a part of some chosen few, almost like a race or an ethnic group. We’re not special. I know the world is hard to navigate for us, I know it often feels unconcerned and arbitrary, and I know people could often stand to have more patience with us, but truly, the pigheadedness and sectarian attitude that you put on display here is not going to do shit for anyone. Bye-bye for now xoxoxo.

        • Reply
          Reluctantly Autistic
          2023-08-17 at 6:13 PM

          Completely agree with you and autism isn’t an identity, it’s a damaging disorder for many of us. Eugenics has been discredited as a pseudoscience anyway, so people who go around thinking that there is a eugenics conspiracy are as deluded as flat Earthers. Eugenics doesn’t work and a cure doesn’t even fit the definition of eugenics. It is not interfering in reproduction to stop autistic people being born and that wouldn’t necessarily stop the birth of autistic people anyway, as de novo mutations happen as well as there being environmental factors. I hate the NT bashing crap that these types engage in and yes, lots of the neurodiversity movement is like a cult. You are right for telling them where to go.

      • Reply
        Erick
        2023-02-07 at 10:54 AM

        I see this common rhetoric being spread and accepted in a lot of places on the internet. This idea that “autism isn’t a disease and if you think it is you are evil”.
        This way of thinking is terribly exclusive to the many autistic people who experience far more than just “different personalities”. Many autistic people have their basic ability of language stolen from them. They will never be able to communicate with others and speak for themselves. Many will struggle with regulating their emotions, understanding the world around them, and many will struggle with compulsive self harm.

        This theoretic that autism isn’t a disease is exclusive to others and almost always a selfish point of view. ASD includes many people – some who are capable of accepting who they are and yelling at people on the internet, and some who will never even have that option.

      • Reply
        Autistic Kangaroo
        2023-03-14 at 11:12 PM

        You don’t believe Eileen is autistic? You can listen to her podcast or read one of her books.

  • Reply
    KG
    2022-08-16 at 4:23 AM

    Thank you for writing this blog post! As an autistic person who personally knows former employees of AS, I know that the controversy around the org is not as black and white as the Internet likes to make it out to be.

    Most of the people who vehemently hate on Autism Speaks haven’t actually done their research on the history of the charity. I kept on seeing the “I Am Autism” video going around on TikTok despite the fact it was made in 2009 and the board of directors agreed to take it down because it upset a lot of the community (and even some of the directors). Autism Speaks isn’t like that anymore. It’s upped its game and has progressively stopped with the fearmongering over the years, which indicates it’s going in the right direction.

    As early as 2012, quite a few representatives of the organization spoke out after the Sandy Hook shooting. They were adamant in saying that autism does not cause violence, and that many autistic people would be stigmatized as a result of that false claim. Does that sound like something that members of a hate group would say?

    I’m not saying AS is perfect, as they could do some more stuff to improve their reputation, but I don’t dislike them by any means. They’ve done a lot to help our community despite what people claim. I applaud autistics like Eileen who have joined the organization to represent us. Instead of writing hateful messages to her because of her opinions on a charity (that she personally works for and knows the ins and outs of), maybe do something to actively help the autism community?

    I really wish that people would do actual research before making extreme claims. The iilluminaughtii (or however you spell her name) video had a lot of misinformation and even promoted some dangerous ‘advocates’ in the autism community, but it gained millions of views. Even the autistic employee who resigned from Autism Speaks due to Suzanne Wright’s questionable speech in 2013 doesn’t think they’re a hate group. He wrote a very nuanced essay about it, called “My Time With Autism Speaks” (by John Elder Robison). Anyone who wants a more middle ground perspective should take a look at what he has to say.

    Again, thank you for speaking your truth and doing your best to counter misinformation in the autism world, Eileen. Always enjoy reading your blog!

    • Reply
      Noah
      2022-09-22 at 10:45 PM

      What information specifically featured in illuminatii’s video was false?

  • Reply
    Fred
    2022-10-20 at 11:00 PM

    Have a guess whose husband made the video for Autism Speaks?

    • Reply
      Lauren Franklin
      2023-02-25 at 8:14 PM

      Wait – was it Eileen’s ex husband?

      • Reply
        Eileen
        2023-02-27 at 1:54 AM

        It wasn’t… No idea why “Fred” is saying that. My husband isn’t involved with Autism Speaks whatsoever and never has been.

  • Reply
    Elliot
    2022-12-04 at 10:20 PM

    I personally think that if even if Autism Speaks has changed their ways, why should we have to settle for a system created by allistic people scrambling around to fix their mistakes and understand our needs? So they set a place at the table for a few of us, so what. Why are we still not running the show? I don’t support Autism Speaks because we don’t need the middle man. We should still be de-platforming this organization because those resources and attention can be better placed in our own hands, such as with ASAN.

    • Reply
      Eileen
      2022-12-20 at 4:13 PM

      ?

    • Reply
      zoe
      2023-04-02 at 9:50 PM

      Get off your ass and run the show then lol! This is exactly why, because people like you are happy to make their mouth go on a keyboard but aren’t so happy about putting the work in to do what they say they want to do so…. rock and hard place mate.

  • Reply
    Thomas
    2022-12-05 at 2:24 PM

    Autism Speaks has been attacked by autistic advocates and autism speaks responded. The reaction by many but not all of autistic community reveals it’s extremism. I am autistic and have also been attacked. They aren’t actually advocates—they are narcissists with power. They pummel people who disagree. One day sadly they’ll be on the other end of the harassment.

    • Reply
      Reluctantly Autistic
      2023-08-17 at 6:21 PM

      So spot on, Thomas. They’ve attacked me and accused me of all sorts because I’d like to be cured from my autism. I got told to kill myself more than once but these oh so mental health aware and lovely people! They are like you said, narcissistic bullies.

  • Reply
    Finn
    2023-01-29 at 12:22 PM

    Jesus christ. ‍♂️

  • Reply
    Bob
    2023-03-03 at 12:31 AM

    This is a really, really bad article. First off you work there and are certainly biased. You were also probably paid to post this. There’s a reason AS get as much hate as they do. They’re a horrible organization and you thinking they’ve actually changed is laughable. They were just called out and didn’t want to lose more money. Also to say anyone who doesn’t support them just haven’t done their research is insulting.

    • Reply
      Eileen
      2023-03-16 at 1:28 AM

      I wasn’t paid a cent to write this. My article is based on facts, unlike your comment.

      • Reply
        Erin
        2023-05-02 at 12:16 PM

        It’s a good article. The bias in these negative comments is palpable. I’m tired of this overly negative, entitled, unforgiving, intolerant culture we have fostered. I blame the internet (mostly), and the media corps that benefit from this discord. People are feeling powerless in their own lives and are looking for something—anything—to transfer their pain onto. They need to blame external things for their misery. And the bigger their miserable groups the better, and this is why we see pitchforks everywhere. I hope it passes. I’m tired of all these entitled jerks being abusive to everyone who has an opinion that differs from theirs. I’m tired of their unchecked bias and lack of grace.

        Be strong. You know the truth, and the fact that you are a REAL advocate for something makes you more powerful than all these keyboard warriors. Much love.

  • Reply
    Tyler d
    2023-03-11 at 11:23 PM

    I am not convinced, nor am I a f***ing puzzle piece. Don’t speak for me. They should change their name to “NTs speak”.

    Not in my name, not in my voice.

  • Reply
    Autistic Kangaroo
    2023-03-14 at 11:10 PM

    Thanks, Eileen. The main thing that I know about Autism Speaks is that it hosts the wonderful podcast Adulting on the Spectrum, which features two autistic people interviewing other people with autism.

  • Reply
    Fuck You
    2023-04-10 at 10:50 PM

    hey! fuck you!

    • Reply
      Erin
      2023-05-02 at 12:22 PM

      This is abusive behaviour. You are a hypocrite if you are saying this because you think AS is a hate group. You are being hateful to a person you don’t know who clearly cares a lot about people in the autism community.

  • Reply
    Henry
    2023-05-02 at 9:23 PM

    This is a profoundly, deeply problematic article that casually ignores a mountain of evidence to the contrary. Comments like KG’s simply want to brush this under the rug or pretend it isn’t black and white; it is. It is my hope the government formally classifies Autism Speaks as a hate group. The fact they sometimes do good things is the “what aboutism” logical fallacy. The fact they did good things doesn’t negate the momentous and systemic harm this group has done. I’d personally love to watch them burn to the ground or have autistic people perform a hostile takeover.

  • Reply
    Anonymous
    2023-05-10 at 9:15 PM

    There was a post that depicted Blue from the Blues Clues show setting the blue puzzle on fire, despite being colored blue. Pure hypocrisy.

  • Reply
    Anonymous
    2023-05-10 at 9:25 PM

    Using blue colored characters (such as Blue from Blue’s Clues) to attack the blue puzzle comes off as hypocritical.

  • Reply
    Anonymous
    2023-05-20 at 7:51 PM

    The Autism Speaks deniers in a nutshell:

    “I’m so obsessed with spreading lies and misinformation on an organization that I love to use fictional characters attacking the blue puzzle, making hateful comics on it, and wishing death on it by drawing a burning building because it makes me a better person, Go fucking me.”

  • Reply
    Fred Jones
    2023-05-20 at 7:52 PM

    Well gang, it looks like we got a case of lies and misinformation on our hands.

  • Reply
    Anonymous
    2023-05-20 at 7:54 PM

    Stop Living in 2009 – The Musical.

  • Reply
    Anonymous
    2023-05-20 at 8:05 PM

    In Stop Living in 2009 – The Musical, a bunch of people, both autistic and non-autistic continue to beat a dead horse by spreading lies and misinformation on a organization by doing hate art, protesting, making hateful comics out of it, brainwashing a lot of people into turning against the blue, attacking people whenever they tell them “Autism Speaks has gotten over their past mistakes”, using the “Autism Speaks is a hate group that wants to cure autism” excuse, making cruel videos and bad reviews on the organization, and refusing to accept change, and instead choose to get away with spreading so much hate, it would make Barney the Dinosaur’s hatedom proud.

    Come see a broadway musical that will finally reveal the true colors of the #ActuallyAutistic community to the world and a lot of people on social media will finally regret their hatred on Autism Speaks and learn to accept its change once and for all.

    Stop Living in 2009 – The Musical, coming soon to a theater near you.

  • Reply
    Anonymous
    2023-05-22 at 6:39 AM

    The #DontLightItUpBlue is the new #BringBacktheNationalPokeDex. Change my mind.

  • Reply
    finn sambono
    2023-06-07 at 2:17 AM

    i think that if ur sources are from autism speaks you need to actuaslly talk to autistic individuals about the subject and ask them. autism speaks has over and over again sent children with asd to convertion camps where they have been tortured for stimming and for BEING AUTISTIC?? and has donated to those programs, only 1% of its profits is used to help autistic people and their families. the problem is not that they are ‘searching for a cure’ the problem is that they are trying to cure people who have it are are willing to suport torture of LITERAL CHILDREN. idk maybe if youre going to say to do reserch you should maybe get your information from sources outisde of Autism speaks, because of cource they are going to say they are doing good for the world because they want to protect their brand and thir buisness

    • Reply
      Eileen
      2023-06-08 at 7:45 PM

      Autism Speaks has sent autistic children to conversion camps? That’s a big unfounded claim you’re making. We actually are big supporters of stimming at Autism Speaks. https://www.autismspeaks.org/blog/i-stim-communicate-my-feelings

      • Reply
        moosh
        2023-10-06 at 11:09 AM

        they are killing autistic kids! believe what you want but we will never accept you in the autistic community if you support autism speaks. I’m autistic myself and I would rather kill myself over and over again than ever support a “company” that supports the exact opposite of what they apparently stand for.

  • Reply
    Proudly Autistic
    2023-07-05 at 12:17 AM

    The internalized neurotypical supremacy runs deep with this one. You’re autistic and you work for and are paid by the org you’re defending? Not convincing. When the majority of the board is autistic, the head of the org is autistic, and over 85% of employees are autistic, talk to me then.

  • Reply
    Landon
    2023-07-11 at 4:29 PM

    First off, I would like to point out that this comment section is highly toxic. We should accept everybody’s opinions, whether we agree with them or not. I think that it is best to understand both sides of a debate before making a decision, and I am glad to see that Eileen is sharing her opinions in a calm manner, and I think that whether we agree with her or not, we should totally respect that and strive to do the same. That being said, I am a 16-year-old with high-functioning autism (Aspergers) and I just wanted to share a few of my thoughts. I was diagnosed with Aspergers when I was 4 years old and since then I have gone through some social groups and speech therapy sessions. I believe that those sessions and groups have helped me a lot in terms of communicating with others, understanding facial expressions, and reading the room. My belief is that Autism should 100% be researched more. Not because we should be looking for a “cure” in terms of something along the lines of “turning off the autism switch” (my own words), but because it could lead to discoveries that could help so many autistic people like myself and for non-autistic people who ignorant about what autism really is. There is a wide spectrum of people with autism, and there is an even wider spectrum of opinions. I completely agree that Autism Speaks has made very questionable statements in the past, but let’s not let the past get in the way of the present. The “I am Autism” advertisement (which frankly, I can’t stand to look at another time so long as I live) was more than 10 years ago. A company can go through a LOT of change in that amount of time, let alone an organization. But we will see. They are still questionable in my eyes, but they seem to be making progress. I am in the process of researching both sides to make a decision on where I stand so I would love to understand everybody’s opinions! You are welcome to reply or message me, I even encourage it! It would be greatly appreciated. That being said, please don’t do it in a mean or negative way! Thank you!

    • Reply
      Someone
      2023-08-29 at 4:52 PM

      Hi Landon,

      I too am on the spectrum. I agree with what you said and the same goes for the article. From my personal experience, Autism Speaks has been one of the most involved groups in my needs. I was actually led to them because of my regretful
      experiences with other organizations.

  • Reply
    Asa
    2023-07-21 at 9:43 PM

    I find it funny how most people diss on misinformation (like climate change being a hoax), clickbait, and propaganda, yet like to believe false information on Autism Speaks. Extremely hypocritical!

    • Reply
      Reluctantly Autistic
      2023-08-17 at 6:18 PM

      They take the notion of eugenics seriously and then go and make fun of people for believing in conspiracies. The neurodiversity movement in its present form is harmful and VERY hypocritical. They, like any conspiracy and/or cult only listen to things that confirm their belief that people want to harm them because they have autism.

  • Reply
    Asa
    2023-08-03 at 12:24 AM

    Me *doesn’t trust any misinformation*

    Also me *believes Autism Speaks is a hate group and the puzzle piece that represents a symbol of hate, which passes off as misinformation*

  • Reply
    Asa
    2023-08-12 at 4:03 PM

    I think it’s time to accept the fact that a lot of users on deviantART (such as ArthurEngine, Tobymavisforever, etc), YouTube, Twitter (such as Jason the Cartoon Fan), Facebook, TikTok, tumblr, Instagram learn to live with Autism Speaks because it ain’t shutting down anytime soon. Doing stuff like clickbait content and hate art won’t make the organization disappear. It basically makes the Teen Titans Go! hatedom look tame by comparison.

  • Reply
    Erica
    2023-08-30 at 10:24 AM

    I recently came across a few posts that implored people not to give to Autism Speaks and I wondered what it was all about. I’ve been reading articles on both sides of the debate to try to educate myself. I am left with one question that I keep coming back to, that can only be answered by people who have autism. In the pieces that are anti- Autism Speaks, it keeps coming down to the fact that they feel like their diagnosis is being treated like a disease, instead of just a naturally occurring neurodivergence. They don’t want to be “cured” but accepted. They don’t feel it is something a parent has to grieve and they don’t appreciate the negative connotations. It occurred to me that this may be coming from a privileged standpoint, so to speak. What about the people with higher lever Autism diagnosis? The people who struggle with being able to communicate to the point that they have no “voice”, the people with sensory issues so severe that they can not eat, leave the house, etc? These are not the people celebrating their differences. To them, Autism has profoundly affected their ability to live their lives. If they were able to cure some of the things that keep them from being able to independently live their lives, woukd their answer be different? Are these people speaking for them, as well? I’m not trying to be offensive but I’d really like to hear thoughts on this.

  • Reply
    Asa
    2023-10-15 at 6:03 PM

    Butthurt Autism Speaks deniers: aUtIsM sPeAks ssUxXxXx!!11!!!111! tHeY wAnT 2 cUrE us!!11!!!111! aUtIsM sPeAkS hAtE aUtIsTiC pEoPlE!!11!!!111! tHe bUlE pUzZlE iS a hAtE sYmBoL!!11!!! dOn’T lIgHt iT uP bLuE!!11!!!
    Grover: Hey! Leave them alone!
    Big Bird: You don’t deserve us you toxic deniers!
    Julia: You are NOT welcome here!
    Percy: Autism Speaks is a hate group? Such delusion. Pah
    Gordon: This propaganda is disgraceful.
    James: Misconceptions are disgusting.
    Henry: False misinformation on an autism-based organization is despicable.
    Thomas: Cinders and Ashes. Those type of people do not deserve any attention.
    Elmo: Elmo doesn’t like misinformation-blinded fools.
    Cookie Monster: RAAAAARGH!!!! ME NO LIKE AUTISM SPEAKS/ABA MISCONCEPTIONS!!!!! RAAAAARGH!!!!
    Blue the Dog: *blows a raspberry to the deniers*
    Bert: Why I oughta…
    Barney the Dinosaur: And I thought I was delusional.
    The Count: These type of people are so delusional! Ah… ah…ah!
    Edward: Bust my buffers.
    Sir Topham Hatt: You people that fall for misconceptions like this have caused confusion and delay.
    Toby: Can’t these people just learn to get along with others that support Autism Speaks and ABA? Gee.

  • Reply
    Anonymous
    2023-10-22 at 11:54 PM

    Sane and respectful Autism Speaks hater: Look, me and my friend may hate Autism Speaks but we can handle and respect your opinion if you like or love it. Besides, I love your content, including your blog.

    Toxic Autism Speaks hater: HOW DARE YOU LOVE AUTISM SPEAKS!!11!!! YOU DON’T DESERVE RESPECT! THAT ORGANIZATION DISRESPECTS AUTISTIC PEOPLE!!!11!!! WE WILL WRITE A CALL OUT POST ON YOU BECAUSE YOU NEED TO TAKE CRITICISM! STOP SUPPORTING AUTISM SPEAKS! IT IS A BAD ORGANIZATION! SELF-DIAGNOSED AUTISTIC LIVES MATTER!!11!!! REEEEEEEEEEEEE!!11!!!

  • Reply
    Anonymous
    2023-11-01 at 7:43 AM

    It’s utterly insane how many people act over an autistic based organization. I’m looking at you cartoonaboos.

    The hate Autism Speaks gets and the things people do and say, like making terrible propaganda art, bullying, vandalizing, etc, is extremely embarrassing and just pathetic.

  • Reply
    Anonymous
    2023-11-01 at 7:46 AM

    People like this make me sick. Autism Speaks may not be the best thing in the world but it’s what we got for a long time and your entitled to your opinion but when you hurt others, that’s not okay.

  • Reply
    Asa
    2023-11-01 at 7:53 AM

    https://pbs.twimg.com/media/F9VYKVUa4AALo7g?format=jpg&name=900×900

    Doing disgusting stuff like this is actually considered a crime. Did you know that?

  • Reply
    Frank Sterle Jr.
    2023-12-29 at 11:54 PM

    As a boy with an undiagnosed autism spectrum disorder, my Grade 2 teacher was the first and most formidably abusive authority figure with whom I was terrifyingly trapped.

    I cannot recall her abuse in its entirety, but I’ll nevertheless always remember how she had the immoral audacity — and especially the unethical confidence in avoiding any professional repercussions — to blatantly readily aim and fire her knee towards my groin, as I was backed up against the school hall wall.

    Luckily, she missed her mark, instead hitting the top of my left leg. Though there were other terrible teachers, for me she was uniquely traumatizing, especially when she wore her dark sunglasses when dealing with me.

    But rather than tell anyone about my ordeal with her and consciously feel victimized, I instead felt some misplaced shame: I was a ‘difficult’ boy, therefore she likely perceived me as somehow ‘deserving it’.

    I was much too young to perceive how a regular-school environment can become the traumatizer of susceptible children like me; the trusted educator indeed the abuser.

    Perhaps not surprising, I feel that schoolteachers should receive mandatory ASD training, especially as the rate of diagnoses increases. There could also be an inclusion in standard high school curriculum of child-development science that would also teach students about the often-debilitating condition (without being overly complicated).

    If nothing else, the curriculum would offer students an idea/clue as to whether they themselves are emotionally/mentally compatible with the immense responsibility and strains of regular, non-ASD-child parenthood.

    It would explain to students how, among other aspects of the condition, people with ASD (including those with higher functioning autism) are often deemed willfully ‘difficult’ and socially incongruent, when in fact such behavior is really not a choice.

    And how “camouflaging” or “masking,” terms used to describe ASD people pretending to naturally fit into a socially ‘normal’ environment, causes their already high anxiety and depression levels to further increase. Of course, this exacerbation is reflected in the disproportionately high rate of suicide among ASD people.

    As for my own autism-spectrum disordered brain, at age 56 I still am ‘undiagnosed’ [due to official-diagnosis unaffordability], though that means little to me. It’s an obvious condition with which I greatly struggle(d) while unaware until I was a half-century old that its component dysfunctions had formal names.

    I’m sometimes told, “But you’re so smart!” To this I immediately agitatedly reply: “But for every ‘gift’ I have, there are a corresponding three or four deficits.” It’s crippling, and on multiple levels!

    Besides the ASD, I also ‘live’ with a formidable combination of adverse childhood experience trauma and high sensitivity, the ACE trauma in large part being due to my ASD and high sensitivity. I self-deprecatingly refer to it as my perfect storm of train wrecks.

    Coexisting with and seriously complicating this vicious combination is “core shame”. While my father had an ASD about which he wasn’t formally aware, my mother had suffered a nervous breakdowns and perhaps even postpartum depression that transpired around the time I was born. If so, it likely would have excluded shared/joyful interaction with me as an infant.

    It would greatly help explain why I, among other debilitating traits of core shame, have always felt oddly uncomfortable sharing my accomplishments with others, including those closest to me. And maybe explain my otherwise inexplicable almost-painful inability to accept compliments, which I had always attributed to extreme modesty.

    Thus, it would be very helpful to people like me to have books written about such or similar coexistent-condition life tribulations.

    Largely as a result of the abovementioned, I’ve suffered enough unrelenting ACE-related hyper-anxiety to have known and enjoyed the euphoric release upon consuming alcohol and/or THC. However, the self-medicating method I utilized during most of my pre-teen years was eating, usually junk food.

    While low-functioning autism seems to be more recognized and treated, higher-functioning ASD cases are typically left to fend for themselves, except for parents who can finance usually expensive specialized help. But a physically and mentally sound future should be EVERY child’s fundamental right, especially considering the very troubled world into which they never asked to enter.

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